Journal History

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Friday, December 31, 2004 11:29 AM CST

Happy New Year to all...

Bart did not make it home, da##### the airlines..went to airport 2 days, both times flight was cancelled, can you believe that? However, he will be here next weekend, and that will be all the better..we just miss him.

Mom got her hair cut yesterday, all over, and it looks adorable, ...she may get a wig, not sure...her repeat CT on first report looks ok, no active bleeding, and she sees the neurosurgeon next week. We picked up her report at Med Records and read the rad. report, so she feels better. She is doing well, but slower, though are her age, after this large a surgery, I can see why!!! She looks wonderful.

All is fine. This year end, and the month of January, 2005, marks our end of 4 years here in brain tumor land. The change it has wrought on our family is immense, and cannot be turned around. Liz has lost years, but gained a life of knowing what matters and how loved she is....my other kids have lost years of our attention, and time...that can never be regained. I guess today I hurt for it all, and it is totally pointless to wish, but there are days I just wish we could return to before, good vision, riding a bike, not being so different., not spending so much time in the hospital and missing games, dances, and our life here. Please understand, I KNOW what we are blessed with...good grief, we all know that if our child lives we are unusual and blessed, and without major deficits....I know all that..please dont feel you have to tell me. But, I guess some days are spent in wondering, what if....pointless I understand. We seldom feel sad, but it is allowed, and maybe good to do some times, because as lucky as we are, there are life changes we face every day...meds, vision, memory, friends lost, school difficulty, growth problems, effect on the other kids.,shots, etc etc etc. And, we are then blessed with friends made(hello Peggy,), places we have been, new family-as Seth and Anita and Tom M....gifts we know we have. Maybe it is therapeutic to write here, and review, then it is done, and the fun can come again. Change, that can be so good..bless my BT list, as other families in this group can understand the loss that seems to not be there, as my child is alive...but it is. And, the gains surely outweigh it, we know that.

Vic is at the beach with friends, we miss him terribly. Girls are home, and here for another week, thank Goodness..it is good. Bart comes in the next Friday. We are really good.. Please keep Kathy C in your prayer, and my brother and his family as they travel and resolve things, and also the victims of the tsunami...that is beyond understanding.
Much love to all,
ma

Monday, December 27, 2004 6:49 PM CST

If you are here, you can see what we have been doing!! You know, in Virginia, we do NOT get snow, but woke up to a surprise storm the day after Christmas.! Got about 8-11 inches, and it is great. Is the best gift around.! Our Christmas Day was wonderful, very relaxing, saw all the cousins here, talked to the family away, and had loads of oysters on the grill...then, day after, woke to lots of snow, went to Church, and home to snow all day. It is beautiful! However, tonight it did mess up Barts plans to come home, as his flight out of Chicago is overbooked, and he is bumped, until tomorrow we hope!...will see. He booked thru USAir, and of course, here they are striking, and all luggage is lost in Norlolk. Our cousin Joel is home finally from Australia, and a friend of his arrived Christmas night, after traveling 20 some hours, to lost luggage,....luckily she is Julias size and borrowed some clothes..

Mom is slow, but doing ok. Has a repeat CT tomorrow, and I am concerned, but going with her...hope to get someone to read it there, since she is having some odd symptoms..I think she is also tired, which is usual, but still, want it looked at. Will also get copies for her neurosurg. and she sees him next week..she looks good, but admits she feels a bit slow. All here are great, really..some usual issues going on, but hopefully nothing we arent able to deal with...you know we are determined, and strong.

Jay off at jail, and keep our church friend Brandon in your prayers, as he is young, and has made some mistakes resulting in some jail time....he has been in Vics Sunday school class for some time, until now. His family needs some prayer. Also, all the list kids, as usual, and the ones we follow on the Caringbridge pages...the new cancer kids never stop coming.

Becca and Julia home still, which is great. Vic off to beach, rather odd weather for it, but off for a couple of days. Jay is good, end of year stuff. I will step out and also ask for prayer for my brother Bill, as he and his family make life decisions,...they need guidance to do the best thing. Please keep my long distance friend Kathy Charleton in Florida in prayer, I can for some reason feel she is needing it now..she is Roberts mom, as well as 3 other beautiful children....you remember Robert died not too long ago.

The girls had a wonderful time in Florida, and are still talking about it...Jayne and Jim, thank you for such a special trip.

Let us hear from you all, please. Keeps the point of writing here.
Love to all, ma

Friday, December 17, 2004 5:53 AM CST

Good morning all!

Things are good here. Sue and John stopped by earlier in the week, and John looks and is doing great..they are always so positive and cheerful, what a treat for us to see them. They ran by moms, and spoke to her, and Ella, and it did mom a lot of good to have the company...and us, to see them. So, thank you for coming by, and the Christmas gifts as well.

Mom is doing well...stitches out next Monday, and her balance is better, she is tired, but less so, and her vision, memory, speech, and all are intact..we are blessed for that.. Amazing that she can have neurosurgery less than 2 weeks ago, and be doing so great at the age of 82!!! She is wearing cute scarves, and probably will not bother with a wig, now that she is used to her hair, or lack of it, and besides, the short look on her is really great. So, again, thanks for all your many calls, prayers, and wishes...she really is doing great.

Julia and Becca are in Florida, shopping non stop with Mama Jayne...I think yesterday they went for 7 hours...they are all very alike, and I know the girls have been so very excited they could not wait to go and see them..they love going, and it is much fun to get calls hearing them all laughing. Jayne and Jim are well, thank you, but we miss Holidays with them, so is good the girls went..they are having a ball.

Jay, Liz and I spoke yesterday in Richmond to a rather large group with and for St Jude, as they love to have families speak when they can...we love doing it, and meeting the St Jude staff, as they are always so very nice..St Jude accepted a check for $30,000 and a pledge for a million, so well worth the trip. We will do anything they ask us to do for them...though I am not sure about that doo dah parade!!! Liz is very poised, she does well.

Vic, we are so very glad to have him home. He is happy, doing well, and close to us again. Praise God..what a great time this season is!
So, to all of you, Have a wonderful Christmas season. Keep our Nebraska friend, Steven in your prayers, as he finishes his first semester at college, and adjusts to all the college things. Keep all the travelers this season in your prayers, and also, all our friends with loss this season, as that is unimaginably hard.
Love to all, ma

Friday, December 10, 2004 5:51 AM CST

Hi all,

Mom is home....we went early yesterday, and Dr Ordonix sent her home....she is less dizzy, and no vision, or weakness problems. She is slow, and holds on, which we are glad for. She will have some real short hair, and Nancy and I bought some scarves, hats, etc for her to wear for a few months. She will see Dr Ordonix in 2 weeks, and rescan in a month...more scans to do, we are pros!!!

Overall, Mom is good. She is very clear, and tires fast...normal for brain surgery, I would think. †hey are both doing fine, though shaken up by this all. Cards are great, calls ok, but please for a couple days, no visits...she really needs to just sleep.

Thank you for all the prayer, emails, calls, and thoughts...it is such a help. She loves the cards, and we can do meals, etc...she did ask if she could drive next week....think she needs to get the staples out first, dont you think/??
Much love to you all, we are good. Did see the Endo, and will not do the estrogen now, need more growth, and I agree with Marta to wait.

ma

Wednesday, December 8, 2004 7:11 PM CST

Hello All,
Mom is still doing well, still in ICU, mainly because the step down unit has no bed for her...may come home tomorrow, if she is walking well and not dizzy, and IF her head bandage is not messy....She is ok to come, with a nurse in the am checking BP and helping with her bath....we can surely handle food and being there.

All is well....kids come home soon, and Christmas will happen...we are good. Please sign in and keep in touch, Much love, ma

Tuesday, December 7, 2004 2:29 PM CST

Hello all,
Mom is much better, the drain is out, her head does have some staples, and she may end up with a pretty much shaved head, but she is sitting up, very alert, and will hopefully be up and walkng this afternoon...that is the plan!! Tomorrow, if she does as well as hoped, Dr. Ardonex will move her to a regular room, and then of course she will not be long in coming home we hope.

So, thank you for the calls, and she really looks much improved, even drank some delicious(haha) chicken boullion I took...the all liguid diet is pretty unappealing.

Her staples match Lizzies, though I think Liz had more...she has not seen her hair yet, and I think she does not want to!!!

Will update later as well, and for sure if any change.
Love to all, ma

Monday, December 6, 2004 9:19 PM CST

Hello to all, and thanks for all the prayers and calls for my mom. She is very stable, the drain, or brain drain, is taking care of the blood clot nicely, and she is more alert today, less confused, and her arm weakness is much better. She is still in ICU, hoping to go to a regular floor tomorrow..She looks good, though she will have to shave her hair I think, as 1/2 of it is gone now.

I will keep all updated, and if any change let you know. Love to Bart, Becca, and Julia, as well as Bob Nimmo and Marge, as they worry from far away...really, I would tell you to come home if I was being told to, she is doing well..they fully expect her to be fine. If there is any change for worse I will call right away, and the night of surgery, it was 3 am, so that was pointless. She is recovering well.

all is ok here, Liz fine, we are tired from our trip, it is always very wearing, just all the tests and waiting. Still, things with Liz are perfect, she has totally clear scans...no residual, no anything but normal....Praise God for that.
Love to you all, ma

Sunday, December 5, 2004 12:13 AM CST

Hello all! Great trip, and all clear, Lizzies scans look super....no evidence of anything that should not be there...Praise God.
We missed Peg and Lyle totally, not sure how, the Grizzly house is wonderful, but failed to get any messages to us...at all, so we never knew they got in and called, and I did not have phone nos, or where Peg was staying....we rode the route, to find her running but that is hard to find when the Marathon in soo very long. Very dissopointing, however, we will just work our summer trip around them.

Got home safely, however, my mom was admitted last night to Sentara Norfolk General,....she has been having some confusion, and after going through the Obici ER, and being transferred to Norfolk General, she had surgery last night to remove a subdural hematoma, ....The neurosurgeon did a burr hole surgery, and the plan is to watch a day, rescan, see if the clot is draining and hopefully that will be the case. She is alert, moving well, and totally stable...she is in the ICU, and we are with her in "shiift"s, with dad there most of the time... Again, the neuro surgeon feels she will be fine...the blood clot appears to have been possibly old, with a new one as well...however, she was not having major symptoms of damage, and is doing well now too. So, she is in ICU, had neurosurgery during the middle of the night, is now doing ok, very stable, and we will know more tomorrow am after they rescan....
Thanks to our minister, John Shappell, for immediately going over to visit today after Church, Joe, Jay, Nancy and I very much appreciate that, it means a lot.

Again, Liz is totally great...she is doing so very well. Dr Merchant is wonderful, and we just love St Jude...could not be better.
Keep the prayers going please, for so many need it. Love to Peggy and Lyle, and we miss you.

Also, we did see, and hold, Hayes, and not to put it last, as he was beautiful..a total highlight, and I just wish we were closer...Seth and Anita are perfect parents, and seeing him is hard to describe..was such a circle, all they went through with us, and then to see their son, and to love him..very special.
Love to all, ma

Thursday, December 2, 2004 9:29 PM CST

Hey ya'l! This is Julia. Mom wanted me to update tonight to let everyone know that Lizzie had her MRI today and everything is CLEAR!!! Such great news!! So now they can relax and have fun. They are visiting Seth and Anita and baby Hayes and I am soo jealous! Vic said Hayes is adorable which Im sure he is. Dad took lots of pictures so we will put some on here when they get back. They will be back home saturday night so Im sure mom will update more then, just wanted to let everyone know the good news of CLEAR SCANS :) Also, pray for them to have a safe trip back!

Tuesday, November 30, 2004 6:51 PM CST

Hello to all, and again, Merry Christmas!!!! After all, tomorrow is the first of December!!!!!

We are off, and the girls are here in Va and N Carolina, in exam week....as usual....Vic is with us, and will meet Dr Merchant for the first time....for those who know Vic, Dr Merchant is button down, starch, neat, organized, all totallly together....and then, there is Vic, wandering in, hair all over the place.....will be fun. They are hunting 2 mornings...all the guys are very excited. Liz and I are fitting in, doing all the IMPORTANT stuff!!!

Our scans are not until LATE Fri. evening...I think about 4, but possibly not...will get an updated schedule tomorrow...Peggy and Lyle, Bootsie are coming, Steven, we miss you.!! Matt, we miss you too!!

Please keep us in your prayer as we travel, test, scan, and do all the 1/2 year stuff...we trust all is well, it has to be...still, it is totally nerve wracking to wait and find out if it is all great. One, or both, of the girls will let you know Fri. night, they are good at entering info....

Love to you all, there are so many to keep in prayer...relapse, and oddly enough, secondary tumors...2 secondary//primary brain tumors in the past couple months, most unusual...same tumor type, oddly enough, with original high dose rads to cure. The Holidays are treasured times. Love to all, ma

Friday, November 26, 2004 7:10 AM CST

Happy Thanksgiving!!! What a fun day, we cooked all day it seems, greens, turkey, fruit salad with ginger, ambrosia, and then ate at my sister in law, Carol's home...great food, and family. Missed Bart, who is my younger brother who lives in Chicago, now finishing his masters to be a teacher!...major career change .....wont say mid life change, but they are lucky to have him there to teach, he will be soo very great., and miss Joel, our nephew, who is a professional sport fisherman, now in Australia for the season....he is coming back home ( actually lives in Hawaii) for a semester to finish colllege this Dec....nothing like Blacksburg in the winter after a couple of years in Hawaii!!!! Jarratt, another cousin, had to go back to work in Richmond, and Alice, newly married to Dave, who went this Holiday to his home for the dinner, as well as Will, newly engaged and in Raleigh to visit his fiancees home.


And so, we had a great time!! We are good, and getting ready to go to Memphis, which we plan on being a great trip and having a wonderful time...we just know the scans will be fine. Please, keep us in your prayer this one week especially, as we travel, and return home next Sat night late. We are good, please also, sign in and let us know how YOU are! Love to Sue and John, we think of you often, and you were discussed at dinner last night, as we pray for John, and remember Valla, who is so very missed, especially yesterday by her sister, Faye..Jay and Vic off with Sonny...hope they all behave!

Love to you all, ma

Thursday, November 18, 2004 10:23 AM CST

This morning, early, Olivia left her mom, and got her wings...took her a couple of days to die, but her family never left her..it is too hard. Wendy contacted me months ago through our list, for support and we talked several times...she had been treated 10 years ago, and was in remission, however had a treatment related new brain stem tumor, a GBM, which are the absolute worst, cure rate of about 1and no hope at all. Wendy took her to Duke, where they were given options of chemo that noone really thinks would work, so Wendy took her home. From diagnosis to now, was only a couple of months. Please please keep Wendy and her family in prayer, ..to think you are clear and then have a treatment relaped new tumor is something unthinkable...

We go to Memphis in 2 weeks. Please, keep Liz in prayer that all is fine, as we feel it will be. Understand that the reason I am a wreck for a time is because it can all turn in an instant from fine to terrible..and we never ever can know ahead of time..the uncertainty makes life so different as things that matter to others are totally meaningless to me...every day you have to make right because there is no going back, and no tomorrow, just today...it is truly all you really have. So, love your family, and find your way to be responsible and take care of others...find your way to God.

Enough, not a good day right now...think I will take a walk. Kids are fine, Vic entering exams and working very hard right now....is not easy, and he remains upbeat, working, and a joy. Liz is great, and Julia and Becca getting ready for Thanksgiving break.

Liz and I shopped yesterday and found some cute gifts for HAYES!!! who we will see next week....we cant wait. I feel like a grandmom!!!

Much love to you all.. ma

Wednesday, November 10, 2004 6:37 PM CST

HAYES WILLIAM HERRON
BORN 11-11-04
BABY IS PERFECT AND ANITA IS DOING GREAT!!!!
CONGRATULATIONS TO OUR SETH AND ANITA!!!!!!!!! PICTURES WILL FOLLOW.......




Hello All!

Not much going on, which may be a good thing! School is going fine, getting into the swing of things, and most important, Liz is happy. Some usual 5th grade stuff, but overall, she is loving it, and has some friends. Her grades are holding their own, without a lot of accomodations, though I would certainly ask if needed....we do have a teachers meeting in a week, and will see what they have to say...she is doing well, ...Can you believe we are 4 years into this ?? January 2001,, so this is our 4th fall..next Jan begins our 5th cancer survivor year...she can say 5 years, as it counts from diagnosis, not end of treatment(though that is all that counts) It seems like today..often when I wake, it seems like now, as that panic feeling rushes until I remember things are good.. Vic is well, and so much fun having home..he is into lots of things, some good, some not, but getting caught at many of the not so good ones, ....keeps us on our toes. He is sharing my car, which is ok for a bit, teaches us both to schedule our time...however, it is time for mine to come, and now they tell us another couple weeks....WHAT is Ford doing?????? DRiving it from Çhina??? Oh well, just think of the great gas mileage it will get if it ever arrives...have ordered a hybrid...months ago!!!!

Welcome to a new germinoma family, at least to me, from the US...good to hear Cheyenne is well, and I look forward to "talking"...

We go to Memphis Dec 1,2,3...fly out Sat noon or so. Arrive WEd. evening, taking Vic with us, to spend ST Jude time, see Seth and Anita, and Hayes, who will be born by then, and to hunt with Jay and Tom Merchant each am in Arkansas...we are very confident all scans will be clear, as these tumors usually relapse in the early months if they are going to...and we are in the late months, finally!!!! We are also very excited about hopefully seeing Peggy, Lyle, and Bootsie, though we are out on Sat, and they will be tied up with the marathon...am sure we will find Peggy on Fri., and at least get some talk time...we had hoped to leave on Sun but this is how it worked out. She is running the marathon again!!!, and what a feat...she is superwoman!
Marion Grigg consulted with Hopkins and Duke, and got a concensus from these 2 places on how to preceed, and a BMT is not in the picture, just standard chemo and lots of encouragement. So, Hooray, and again a lesson in what????? GET A GOOD SECOND AND THIRD OPINION!!!! If anything comes across here, that must be it.
Love to you all, and keep in touch. Please sign in, we miss hearing how you are all doing!! Love ma

Monday, November 1, 2004 11:18 AM CST

Up at 6 am, more excited than Christmas morning.....she and Jay "found" her electric keyboard, and checked it out, which is what I heard to wake up by....no better sound. What could be better than being 12, (nearly 13), and doing GREAT!!! Thank you all for the years of notes, prayer, thoughts and friendship.. Lizzie is 12~~~~~and dancing off to school!!!



Tomorrow is Lizzies 12th birthday...Happy Birthday!!!

4 years ago, January, Liz was diagnosed. A short eye appt, and Dr ODwyer knew there was a brain tumor, and it all began...thank God for Wendy, Lizzies 2nd grade teacher, who told us she was not seeing the board. Just after the scan, and our initial visit to Norfolk, for a very distressing appt., can Rebeccas birthday...one we always remember as tearful, yet full of friends and love. According to the first visit with the Norfolk group, Liz would not make it past next year...5 years if we were lucky. Then, came Baltimore, and such confidence, Vics birthday, and then Julia, as they all seem to fall in the spring...a season that year of celebrations spent in the hospital play rooms, it seems. Then, Liz turned 9, after chemo in the fall, and we have bald pictures, here at home. tubes and all...shortly after, she pulled the tube out, and we finally were able to ditch the IV fungal meds....the next birthday, 10, she was again bald, after relapse, and St Jude....

One of our greatest gifts has been St Jude in Memphis...not just where Liz had radiation which we believe has cured her, but where we met so many people that remain important to us..and still, I remain amazed, at the night late Dr Merchant emailed me to call him, now, at this number....and I did, and he answered, some 11 pm his time...giving me info, hope, and a long term friend right there.

And so, now, Liz is 12. An age, I sometimes did not feel certain she would make it to..not just the cancer, but I guess the fungus that was the most scarey and unpredictable...the odds of beating a germ cell brain tumor are pretty good, the odds of having beaten this fungus were rather slim...so slim , and those who know me know my obsessive research, that I read one tiny pub med article and never read again...but, Live she did, and as a family we are so together,.....we are thrilled and proud of all our children. They have grown, and shown what real strength and love is...they have all learned more than many ever do, and God has plans for all 4 of them. We are blessed beyond words, and now, to see another year that is a gift, is wonderful.

In the past week, 3 of our list children have died...all of them very long and hard, with parents that allowed them to go praising God for their lives, right with them, and never leaving them....they gave them back to God after the fight got too hard...every parent I know doing this it seems reaches the point of letting go...even the ones whose children live. Maybe in the letting go, we can allow God to take over and do what is best, and use us all to do what we can do best...I hope so, it takes a long time to get here. There were 3 new germinoma families in the last 5 weeks...the rarest of all tumors. One in New Zealand is not getting radiation, as her Drs. must not know...the odds of her not relapsing are slim..the family will not correspond with me now, but you know I was honest as I could be, after our experience...another in New England is doing great. So many, and as we move on, going into ending our 4th year of this, it is impossible not to be emotionally involved with those who will not make it... 4 years ago, Vic prayed for a miracle...and I told him I think he got it, in the tumor type.. It has been a long way, to get to this birthday, and so we celebrate not just another birthday, but the gift of years we could have not had, and I also think of Cheyenne, of Garrett, of Wendy and her Olivia still struggling, and the many others we just cannot forget..Lizzie is our gift, but without remembering the others, we would not know it. So, thank God for our family, and our blessing, but also keep the others close.

And so, she is 12, tomorrow. We will have a big day...cupcakes at school, Vics last game of the year, and presents. Wed night we will have a fancier dinner, and Fri. Liz has asked just a couple girls to spend the night....Pray for it all to go well. Julia will be home on the weekend, Becca cannot come...we will miss her.

Keep in touch, and remember Sue and John, Marion Grigg, Ann Powell, and so many others. Take the time when you can and follow the links on these caringbridge pages, checking out these brave kids, and bless their families.

Much love to all, ma

Sunday, October 24, 2004 12:02 AM CDT

Hello all, hope you are doing great!

Rain again here, but that is ok, is a good fire day, to study and relax...Kids have tests this week, so we are doing that sort of thing. Not fun, but needed..

Met with the school group about the ebeam system, and it apprears it can do a lot of things...help Liz see at her desk, but also allow the teachers to do more, so that is even better if there are many uses for it...Will see what the actual cost of it is, though I am committed either way. The school will help some, but it will still run us several thousands....my point being, donate all you can to your choice charity, as cancer care, and the care once in remission, is costly and the need does not end. It is a neat system though...and she can see and read it all from her desk anywhere in the classroom.

Not much news here..all is going pretty well. Jayne and Jim are back in Florida, and had a really fun trip here, and we wish they would come more often..it is so good to have them here. We are looking for a place for next spring's graduation, for Becca, and all the places near Harrisonburg are filled up totally, this far ahead. So, we are looking into camping, and will see how that sounds..I think it would be fun, and surely we can find a campground somewhere? The grils are good, and so is Vic...he is doing great in football, after we made him play. I hope he will play next year too, but that will be his choice..Liz is still searching for her niche....I think she needs a best friend, and just cannot figure it out, why she does not have a lot of kids calling...she is more of a loner, and very happy. I guess with the older girls our house was full, but that was older I suppose...the absence of sports makes it more difficult I think....should we make her play??? I wonder with her vision how hard it would be.....

Need to run, keep all the families in your prayer. Also, Sue and John, Ann Powell, Marion Grigg, and dont forget to vote!

Love ma

Tuesday, October 12, 2004 6:53 PM CDT

Today Liz weighed 57.5 pounds!!!! (Thurs night) Remember not being able to get to 40?? Hallelujah!, she is working hard at it.. ma





Will be short since all is well. Girls back at school and fine, doing just great. Vic and Liz had school today, and they are good too. Liz is showing memory difficulty, that is for sure, and some frustration, however, that is NOT allowed, so she will be pushed right on.!! Things like vocab, tests, and remembering....lots of work.

I toured the old high school today, or the under renovation Suffolk Cultural Center, which is our old high school, and was beautiful at one time....now is full of pigeons, broken windows, peeled paint, unbelievable mess, HOWEVER< the clean up has begun and it is so very exciting...

Jayne and Jim left today and we had a wonderful time. They are doing very well, look good and our visit was restful, and good. They come very seldom, so the visits are treasured. We will see them on Sunday for Jays brother's birthday, he is 60.!!

Keep in touch with us, and let us know how all are., Keep Sue and John in prayer, as he begins treatment. We do hope to see them sometime soon. Also hold our new list friend Olivia, and her mom Wendy, as they travel back home from Duke, having recieved the worst news...her recurrent tumor is a radiation induced brain stem tumor, and there is not much hope. The odds of this are slim, however, with the possible cure of radiation also comes the possible radiation induced new tumor, and a more agressive one...8 years after her treatment. Is very sad. Olivia is 12.

Please sign in, it is lonely when you dont. Marge, we hope you are well down in Texas!!!
Much love to all, Mary Alice

Join Germinoma Brain Tumors      MSN Groups

Sunday, October 3, 2004 6:01 PM CDT

Hello all, again.! We are still doing fine, Liz is in school daily, and hanging in there. Her memory is making some schoolwork difficult and we are learning to deal with it, hopefully. We are working in a system to help her see in the classroom, called E Beam, to "beam" the board content to a lap top computer where it can be seen at her desk, or printed...she has no distance vision much at all. Things are good, but still complicated it seems, with the effects of the tumor and treatment. It is all a trade off, for her life we realize but many days that really does not make it easy for her. Only one time recently have I heard Liz fuss, late at night when she was tired, and she simply said what we all feel...she wishes she had never had cancer...dont we all, but while she is outgoing, cheerful, and very full of charisma, we should not forget it is Hard. She is slowly catching up growth wise, and while not near her age normal height, she is at least not the size of a 2nd grader. We plan to redo her neuropsych soon, to allow her teachers this year to have input from Charlottesville, and their ideas on ways to help her learn. We are hoping to get to Baltimore soon for her eyes. We are also using the books on tape, at least getting a list of ones she may like to read. She is using her large print books in class this year, which helps. I guess I am running through all this so everyone will continue to keep us in prayer, as while it is looking so easy, in reality, it is and it is not...Things are just never going to be the way the used to be, and there will forever be difficulties to deal with. The E Beam is a great tool for the classroom, but is very expensive, and while she is legally blind/visually handicapped, they do NOT pay for this stuff. Nor did the blind Div. pay to join the books on tape......so, donate to your favorite charity, as while we can pay for all this stuff, most/many of the BT families cannot.. The expenses can be enormous...and most of us parents just sign the line and worry later. So, Donate!!!

Keep your eye out for Lance Armstrongs tour aross America.....one of our Ped Brain Tumor//St Jude moms is riding across with his group, and she has put our kids names on her shirts, so each day her shirts are covered with an assortment of Brain Tumor kids names....Lizzie should be on there too. They end up in DC next Saturday....we are very proud of Elizabeth Sterling...keep your eyes open for her. She lost her son to a BT, and is riding in his honor and to represent our kids. Really neat. Also, wear your Yellow Band, as each $$ goes to Cancer research, and Lances push for all to enter a clinical trial!! Most kids do, but adults dont.

Vic is doing well, his grades are hanging on pretty well, and we are working very hard to keep him motiivated. He is now driving...my new car is ordered, but not here, so we are sharing...we have ordered a Ford Escape Hybird...will run on gas and electric....will see how it works but they are pretty backordered!

Girls are great, Jay and Vic saw Becca this weekend at the VA TECH game, was fun fun and she is good. Julia doing fine, and all willl be home next weekend for Jays 50 Birthday!!!

Keep in touch, and prayers for Sue and John, our friend Wendy and her daughter traveling to Duke today for a relapsed brain stem tumor, and the Griggs family as they begin chemo for Lymphoma.
Also, to Penny for her birthday, Jayne and Jim for their anniversary, and as they travel here this week for a visit....we are so excited...would say the kids are wild with waiting..keep them in prayer as they drive. My parents are out of town at Elderhostel, traveling home this Sat.

Much love to all, MA

Sunday, September 19, 2004 7:27 PM CDT

Hello All!!! Hope everyone is there, and not totally blown off the East coast yet...one more storm may just do it. Please keep our Florida frends in your prayer, we have heard little from Kathy Charleton, I know it is bad..also, the panhandle people that lost their houses,,,,while all of us with a coastal home know it could happen, if it does, it must be very hard.

We are good. Life with Vic home is great, and he is doing well...he moved to the jv footballl team, is starting and played his first game, probably one of his best ever....even I could tell what was going on..that hurdle is over. Liz is good at school, has wonderful teachers, the best we could ask for, and socially is doing ok...not a repeat of last year so far, and changing classes helps, as well as her feeling more secure, I am looking at the E Beam system, to help her see the board...the school is helping with picking something out, that may help other kids too....the white board notes flow right to her computer for notes...will see. We are determined to find help for her eyes..it is the biggest reminder right now it seems for her, now that she is Growing finally!!!

Girls are good, keep Julia and Becca in prayer as they adjust to being away again....as Becca makes decisions about next year, grad school, or what ever, and Julia has some adjustments common to sophomore year....we miss them.

Jay and I have redone our kitchen...new countertops, Jay made out of maple, wooden, and I am finishing them with Olive Oil...a non toxic, food safe finish!!....my marble island is the same thing. Nothing toxic I know about will come in here again. There is always the issue of organic foods, and this has been my thing for some time....now, just more so. While I do not think Liz and her brain tumor are a direct result of any specific toxin we introduced, I do think these cancer rates are a result of our poisoning Gods world..and the effect of overall pollution on our bodies. So, I use no unnatural cleaners, or foods, or at least I try....Ho Ho's are allowed!! But Jay has been quite tolerant of my refusing his "mystery Oil finish...if I dont know what it is, forget it! And so, I rub the counters each night with good old Olive oil!!! New gas stove, sink, and hopefully this week now outlets, to replace our current extension cords running all over...it looks great. House Beautiful!!! Jay is very talented.

We are good.

Lyle, I Have Updated!!!! We are busy, with school, community things, Pilates class, and other stuff...Please keep John and Sue in prayer, and our list friends. The new BT list members just keep on coming, and there are several I have called, it is just so hard. Also, our friend Marion Grigg, who is newly diagnosed with Lymphoma, and looking for a final diagnosis, and a solution. Keep him and Diane in your prayers...it is so very hard, especially right at first. Keep Steven in prayer, in his freshman year, and his parents, as Peggy gets set to run another marathon, and Lyle is home with lots of girls this year!!
Much love to all ma

Saturday, September 11, 2004 7:24 AM CDT

Hello All! We are watching Hurrican Ivan very closely, as Jay's parents are right on the south/west coast of Florida, and did not leave...we tried to get them to leave, but they feel safe there. I am worried, however, after last fall here with that little storm where we lost power for 3 long weeks...keep them in your prayers.

Girls are good at college, doing well, we miss them. Becca is a Senior, and Julia 2nd year. We are proud of them.

Vic doing fine at NSA, has some bad habits to break from last 2 years but we are glad to have him home. Liz loves her teachers and is doing well...

Jay and I are putting in our kitchen countertops today and tomorrow, pulled the old out last night, so today we should see big things!

The ped. brain tumor list has more and more new members...the list is becoming well known, and there are so many kids with brain tumors...most not as "easy" as Lizzies was....keep your prayers going. Also, John, Sue's husband is going for his consult on Monday, so keep them in your thoughts for agreement on treatment, and that the best drs. find the best treatment! He will be fine. We are waiting to hear.

Keep this storm in your thoughts....we have not heard from Kathy Charleton, in West Palm beach, I assume she is still without power. Lyle, I heard the waves in Jamaica are already a building high....you could do some kayaking!! Much love to all, ma

Tuesday, August 31, 2004 8:21 PM CDT

For those of you worried, we are fine and did not get the flooding you have seen on the news...we are East of all that, and get hit when the storms come in to shore, but usually not when they are inland. We didnt even get much rain! However, we are watching this next storm, and will be out of here if it comes in as a Cat. 4 or so.....that would knock some houses down for sure. So, pray it offshore.

Marge is better, talked to mom, and is going home tomorrow!, feeling like she is going to be ok, and Sheri is going with her for 3 weeks, then Bob, then Scott. All the cousins here in Va / NC are watching her, and will keep her close, and mom will come if needed, though she is hard pressed to leave dad honestly. We are thrilled she is doing so well. Keep her close in prayer.

Also, John, Sues husband, as he continues with tests, and decisions. They are going to be fine, but have some things to decide, as Sue retires to the life of leisure!! haha.

Again, we are good. Vic is a joy to have home, my heart missed him so last year....will it be perfect???? Well, what is??? But, he is here! Liz is continuing her routine of daily "perfect" days, and we are glad. She loves her classes, teachers., and once we get her books, large print books, and tapes all together we are going to be fine. I thank God daily for our wonderful luck with her life., and with all our lives as we know so terribly well that each day is not a given but a gift, and we must treat each one as such.

Much love to you all, ma



Ag

Monday, August 30, 2004 7:29 AM CDT

Mom talked to Marge in Texas, and she is doing ok, sounds weak, but off the morphine, up, and planning on going home this week. Sheri will be there with her, and mom will find out more then I think...they are glad to have talked, and we are thinking of Marge often. Will let you all know how she does as I hear.

More storms our way, and also, keep an eye out for the big one heading to the coast...category 3 or above and we are out of here this time..hope it isnt headed to Florida again, Jayne and Jim may have to head up here. May have to call our cousin Scott, one of the national weather men, to get the scoop..hope it is clear by the weekend, as Jay is running the 1/2 marathon and we hope to go to the beach for a day or 2...Becca coming home overnight, and not sure about Julia.

Girls are good at school, in classes, and like it. Will be a hard year for them both we think. Vic up this am about 6:15, looked so cute and ready to go, hair above his collar, and I am so happy he is here. I think he is a bit happy too, though he does miss his friends at CCS. Liz off and in her class, and I just pray for a good social year for her, as she is a bit shy with her age, and running into the 5th grade things will be hard. Good weekend, with friends over to eat pizza and she should do ok.. Hopefully beginning the year on good footing will help, and she has nice girls in her class, and a sweet teacher that seems on top of things. We went to the Presbyterian Church Sunday, and Vic does like it there, Liz has a big class of 5th grade girls, and the services are certainly upliftning..music, and we really like the minister. Some guilt of course, leaving our Oxford for a time, but I do feel it is right..we would feel less badly but for Joe and Nancy, who we really hate to leave for a time. However, our kids have to find a church group of friends now.

Please keep in touch. Keep our Kathy Charleton, in Florida in prayer, as she is finding life without Robert to be very long and hard, along with single parenting, less $$, but she is very faithful and positive. still, I can feel she is struggling now. Always say one for our Dr Merchant, who we know has been our gift, and of course Steven, who is now off at college, Matt Noyes, and the friends we have from Memphis. Anita is doing well, and I am writing her for more pics, as our computer was out for a long bit and I lost much of my mail..we will see her and the new baby in Dec. (Seth too,)

Much love to you all, and keep Jayne and Jim in thoughts if this storm heads to Florida again. love ma

Sunday, August 22, 2004 1:53 PM CDT

Marge out of surgery and in ICU, on vent for the night, but did well, shorter than they anticipated, and she had 3 bypasses done. They expect her to be in a reg. room by Sunday, Sheri and all with her, she was awake, alert, and doing just fine. Keep the prayers up, til she is in the clear....she is tough, we know that, but hope it is not too bad for her. Keep in touch!!! Love to all, ma




WILL ADD A FAST MESSAGE HERE, FOR PRAYER FOR MY AUNT MARGE KISER IN TEXAS...SHE JUST VISITIED HERE, AND WENT HOME, DOING SO WELL, BUT FELT SHE NEEDED A STRESS TEST. SHE WENT IN 2 DAYS AGO FOR STRESS TEST AND THEY ADMITTED HER, AND SHE IS SCHEDULED FOR A HEART BYPASS THIS AFTERNOON LATE IN BEAUMONT, TEXAS. SHE IS MY MOMS "OLDER" SISTER, AND ABOUT 100 LBS, GREAT SHAPE, PE TEACHER, BUT THEY ARE NOT YOUNG NOW, AND WE NEED TO HAVE EVERYONE OUT THERE REMEMBERING HER. PLEASE KEEP HER IN YOUR PRAYER. ALSO, OUR COUSIN JOHN, SUE'S HUSBAND, AS HE IS UNDERGOING SOME TESTING AS WELL..WILL UPDATE MORE, BUT RUNNING TO GET HAR CUTS BEFORE SCHOOL BEGINS!!! MUCH LOVE TO ALL, MA






Alice is married! The wedding was so beautiful, and she was perfect..it all went so very well. Our girls were also of course georgeous, and Jay and I so proud....to see them all standing there, was to see the years go so fast by. It seems Alice was just running through the back yards in the morning in her pajamas, and her coat upside down, and playing dolls, tea, dressing up, prom, just so very fast it is going by. We wish her and David well...they are very in love. The years do go by so fast, and here, I know there are those that wish them slow, and fast...Kathy, we have you in thought so very much, and I cannot feel the time getting any easier for you, even now after this time. The minister today spoke of his upcoming 50 birthday...and his uneasiness with it. I hope everyone knows I was thrilled to have mine go, and to get one more year done...and have everyone here. I feel each year a total gift, and to have our family still all here, grandparents, kids and Jay and I, we are blessed. My dear friend Sandy died many years ago, the summer Jay and I were married, on July 9, and was buried on my birthday. Many years later, his brother and my friend Ellen had a daughter, Grace, born on July 9...God telling us life continues. For the last 4 years, my birthday, and many more in our family, have been spent in medical places...Kings Daughters, then so far off in Memphis, and the next year waiting, then this year, our 2 years out of radiation, and frankly a major milestone with a germ cell tumor....if they relapse, after rads, it is before 2 years...and with Dr Merchant, noone has. So, to be 50, and have Liz here, is a blessing. I am thrilled with every year that all my children are growing and learning and doing well..and, frankly, to make another year is also a victory, since this whole illness has put our entire family, grandparents included, on another level of knowledge of good and evil, you could say...no guarantees of any future, just a day to day gift. When you go to sleep, you better be right with the world and God, because tomorrow it can all blow up, or be perfect and you wont know until the phone call comes.

So, Happy Wedding to Alice, and Dave. Give Carol and Bill your prayers, as they are frankly now going to have to work out what they want from life to be happy and find contentment. Also Joel as he travels back to Hawaii, and debates his finishing school, going to Australia, and to Will who is planning to come here to work, and has a very nice and cute girl Melissa....we are looking for plans there as well.

My older girls are gone now, both on the road to school...they remain in our constant prayer for travel, and as they make their lives..my heart misses them tremendously when they are not tucked in, but they are older now, and making their own way. Vic played in the scrimmage Fri. and did great, he is anxious about a new school, new friends, and misses his old friends. He remains one of the most sensitive and special young men I know, and having him home is the best thing we have done in quite some time. Liz is great. She is gaining weight, outgrowing clothes, and we are praying for some good school years..it is very easy to watch her smile, and it seems so easy, even her sisters dont really believe me when I mention the fact that she is legally blind...it really seems to be not so..she does so well, but underneath is a tough kid, tough determined parents, and a positive attitude. So, on we move. Much love to all, MA

Saturday, August 14, 2004 7:41 PM CDT

Our computer is broken, and totally out of comission!!! Have gotten Vics laptop to work online, but I havents used windows since Memphis...so, am slow..

All good here, girls getting ready to go back to school and packing up all their stuff...the upstairs is a big big mess. We take Julia Monday, then have a wedding party here on Fri for Alice, wedding this Sat, and take Becca on Sunday..Vic at football, not having a good first week but noone does according to Jordan. He is good, and Liz is too, had a great week at art camp, did dance, music,and drama, and also spent last night out with Virginia..went to a movie, came home late and had great time. Things are good here..we remain terribly blessed and please know it daily. Life is such a gift, special time and often I feel like the luckiest person to have the blessing of knowing this with such certainty. It is a treasure to value life now, and know that there are few things that really matter here, other than your relationship with God, and your love. Summer has been a valuable time mentally for me, and also, for Liz to recover her confidence..going to Memphis is always so good, as she blossoms in that familiar place..hopefully school will help her blossom at some point too,. We continue to attend a new Church, with a ready made youth group..we need it, kids need it, and our old Oxford church is so full of people we love, however, I can feel the need for some change. Will see how it goes. Keep in touch, hopefully all is well. Prayers for Florida and the terrible hurricane, we are fine here, rain, rain, small wind, it blew through really fast, no damage.
much love to you all, ma

Sunday, August 8, 2004 7:53 PM CDT

Well hello all! We are home, and I just wish we had a picture I could put up....we had the most wonderful time with the VonSpreckelsons..and the hurricane, nor'easter, and good surf.!!! Who said the surf in California was better than here?>????

We got to the beach last weekend, and spent some days relaxing and in the sun, then on Tues, Peggy, Lyle, Bootsie, and Steven arrived along with a mini-hurricane. Seeing them again, and being all together again, was just so special...Liz and I were in the Ronald Mcdonald house with them, and really all of us got to be close. Peggy and I share a bond, I think, and Lyle and Liz as well with their very bad jokes (sorry!!!). Steven looks totally great, and ready for college, where he is going soon. He got right out and hit the waves with the guys, and those waves were not small...Michelle withstood the ride well, and is doing super, looks good, and got loads of sun, and now wants to an East Coast Beach bum..maybe one day! She did leave with some sun, for sure. Lyle did get the ocean kayak down pat before he left, but the guys had some macho bruises, sore muscles, andscratched faces to show for the 6 foot waves...and ladies, Peggy can wear a little bathing suit well!!! Peggy and Lyle, well, they are what got Liz, Jay and I though, their friendship, along with several others we met in Memphis, and being with them was like being with long missing family. We had fun, and hope to do it again.

Had a little hurricane, but nothing really, wind, great waves, and rain!!! Lots of sun, cool weather, and a good vacation really. Got home late Sat, and ran by Beccas fund raiser, she is interning for St Jude...was very well done, and we are proud of her. Went to Church today, and Bible study tonight..good day.

Please let us hear how you all out there are...we loved seeing Marge, she is great. Mom misses her. All are good here, summer winding down. Vic begins football tomorrow, some rough times for him this summer, he will have to weather. (us too_. Girls getting ready to go back to college, we miss them already. Keep in touch, and much love from here, ma

Friday, July 30, 2004 7:57 AM CDT

Hello all! Just wanted to let you know we are going to the beach and on vacation for a week.....Also, our friends Lyle, Peggy, Steven and Bootsie will be driving from Nebraska to be with us..we are so excited...they were in Memphis, when Steven had his treatment for Medulloblastoma, an agressive brain tumor, where he was with us in the Ronald Mcdon house....he just got his 2 year scan, and they are perfect as ours were. So, it will be so good to have them with us!

All well here. we are great. Kids are with us on vacation, though Becca has to come home Wed am to work....St Jude Va beach office has a big fund raiser next week, a Regatta on Sat, and she is very involved with it...so we wont have her all week... The rest of us will be there. If you need us, phone 252 261 3167.

Hope all are well. Marge is here from Texas, looks wonderful and she and Mom are having a ball talking .. and talking. It is so nice to see them together. Thanks to her family for arranging her trip, it was the right thing. Need to run, much love to all, Mary Alice

Friday, July 23, 2004 3:02 PM CDT

No real news....all fine here. We are hoping Peggy, Steven, Michelle, and Lyle really get to come to the beach for a few days week after this.....what excitement that would be!!! Will be like old RMH times!

Please keep our friend Sammi in your prayers, as she had her surgery and is recouperating well, some DI that the Docs are sorting out, and her DX is a Rathke's cyst, which is good news, no further treatment needed it seems! Lizzie is hoping to hear from Meg, her internet friend, who is battling spine and brain tumor relapse...

Vic, Becca, Julia and Liz doing well...cutting grass, working around the neighborhood, volunteering, and tutoring, along with music and swim lessons...keeping us busy. Summer remains too short.

Watch the Tour de France, and Lance Armstrong....he is a cancer survivor, and more special to us, a germ cell tumor survivor!...his story in amazing, and we are wearing yellow bands!!! He should win it this weekend..

Keep in touch,and much love to all of you....MA

Monday, July 12, 2004 5:52 PM CDT

Yes, the picture is Lizzie, Carson Jones, and Marlo Thomas!!! in the corridors of the Senate, along with Carsons mom and the congressman from Tennessee..


Hello All!! We are good, hot, and doing well. Had my 50 birthday, and the kids all gave a small dinner with just a couple old friends, very nice. Was good to celebrate, and to answer the does it bother me question, I am so past being bothered by age!!! Our life is good, and we are so blessed with health that getting older is a true gift..I treasure it and give thanks for the time I am allowed here, to age gracefully. My wish is that I get many healthy years, with my family with me.

Things are going along here, summer is a fun time. Lots of going and coming, and kids are well. Jay and I are more tired than we remember being, but think it is the stress of so much winding down, and adjusting to how things "are", along with routine life things...life is not an easy journey, and the doing is in doing it together with someone that loves you..and learning what your strengths are and overcoming your weaknesses...so, we move on.

Much love to all, Mary Alice

Wednesday, July 7, 2004 7:36 AM CDT

PLEASE CHECK OUT THE NEW BEST HOSPITAL ISSUE OF
U S NEWS AND WORLD REPORT

Our Dr Merchant is featured in it, article on best place for the sickest children....picture of him and article..Told you he was the best!!!! Thanks Jayne for letting us know it is in there this week.

Love to all, and we are off to the beach overnight to hit the water! Vic seeing friends, and Liz taking Virginia.. (girls and Jay staying home to work : (

Keep in touch, and love to all who read this, is fun to hear who keeps up this way. Please take a minute to sign in, I know Ellen Upton reads this occasionally, and would love to know who else.

Let us know how you all are, and again, read the US News article!!

Friday, July 2, 2004 7:35 AM CDT

We are headed to the beach for the July 4 weekend...Hooray. We need to get out in the sun, and hopefully it will be a sunny weekend. All is fine here, not much going on, which is fine with us right now...tutoring, piano, drivers ed...all that sort of thing, along with sleeping late. We got our Dec appt to ST Jude, first of Dec, so the guys can hunt...we are so fortunate to also count Tom Merchant as a friend...though far away, we do. We are thinking of Lizzies email friend Meg, who is bravely battling spine and brain spread, and Sammi, who is having a terrible time finding the tumor type and getting proper treatment. Also, Ikkika, who got clear scans too! and congrats for that.

Getting school ideas ready, meeting Tues am with the Div ffor the blind and visually handicapped, to begin getting books and tapes for this school year ready. Am also going to ask the teachers for next year to read IF I GET TO FIVE, thet wonderrful book about living with brain tumor and the amazing bravery and adultness these kids show....maybe it will help them understand Liz a bit better. Keep in touch, not hearing from you often....love to Sue and John, how are you, and we miss you all....congrats on retirement!!! Much love ma

Tuesday, June 22, 2004 9:22 AM CDT

clear clear clear!!

great news yesterday, all looks good. Liz did well, and Dr Merchant feels 2 years is a big milestone, as most BT's dont relapse after 2 years, and fewer germ cells....so, we are better. Our stress level was soo high, but still we were fairly confident that she was good this time...Tom looks great, and is more relaxed looking, good visit. It is a time we can only focus on one thing, for a couple of days, it is just too difficult to face without total blocking out of any distractions..odd how it works for a bit, but however we can cope is what works. Seth and Anita are wonderful, and Anita has a little tummy, is very happpy. They are doing well.

Today we do the spine, and then Nancy and Matt come in, so we will be with them tonight...is like we never left coming back, the most comfortable place to be. Liz must do child life one day, she is the greeter while she is here, taking care of all the kids...confident and relaxed. As if 4th grade never happened!!! Much love to you all, and please continue to say prayers for all the kids, and for Matt who gets his scans tomorrow, and is hitting his 2 years out as well...also Steven who is coming next week...and will be fine also. Thank you for your faith and distance support this trip. Our next step will be to begin to plan, as now, I think we truly can..and after so long. It is now finally that I think I can look into the years and see Liz really there. Please keep our others at home in your mind, as we miss them and wish they were all here, is lonely with out them...Becca, Julia and Vic we love you and miss you tons, wish you were here with us..see you tomorrow night,,,about 5. Much love to all, ma

Saturday, June 19, 2004 8:00 PM CDT

We are off, first thing tomorrow morning....and we are confident all will be fine, though we have not been worth 2 cents for the last week, just stressing!! We have no issues to bring up, all seems great, we are anxious to see and hear how Dr Merchant is, and also see our Seth and Anita, and Matt and Nancy...we see the Herrons Sun night and Matt and Nancy Tues night, so Mon will be free.. We will call the kids here and let them know as soon as we get her scans read, and hope if all is on schedule to know her brain scan by Monday 2ish.....it is however Never set in stone, they are very efficient but in an emergency Liz goes last, as she is not sedated and can go late. They do take the sedations first if possible as they cant eat !!!

So, the kids are here alone, but mom and dad are here in town with them. They should be fine and know this time, NO PARTIES.
They are dream kids, and have been so very special this summer at home. It is just our best time with them all here. Vic, though he is not here on his request and hated to leave Christchurch, is secretely happy to be home, and is so cheerful and pleasant, He is a treat. Please keep them all 3 in your prayers this week as we are gone, and they are alone, and while they are old enough to be here, I dont like it....keep them close in your thoughts.

And, for Liz, as she is apprehensive about thse MRIs, and the labs and getting in the daily IV routine for a bit. No fun. Dont think she is scared of bad scans, but still it is an old routine and we have moved from it enough to not want to do it. Please keep us in prayer as we go..and thank you.
Let us hear from you all, love ma

Monday, June 14, 2004 11:38 AM CDT

Ok, ok, we are better...or I am better. Is all perfect, no, but we are doing better....could be pre-mri jitters, of course, as we leave for Memphis next Sunday and while I just know all is fine, it is such a relief to get the trip done. This will be our 2 year trip, can you believe it, out of radiation...in our fourth year total...long time. All the kids are home, and they are all so good. Jay and I needed them here. We needed the time to see them all asleep upstairs. There is lots going on here with jobs, summer grass cutting, and volunteering. Liiz today is at Ecology camp, long day but she has to give it a try. I am mainstreaming her, as Nita sugggested. She can handle it...

Tried a youth group last night, not our Church, but not as great a time as we had hoped...the adults werent even welcoming to Jay and I, so we will look further. There are other options.. the plan is to also do swimming lessons, possibly gymnastics, and look into dance for the fall. We will keep up the piano, as that is a hit, and Becca wants to take this summer too! I have realized that there are a lot of not too nice girls in the class and witnessed 2 neighborhood girls here making fun of a young 3 year old in my yard, so the problem is not just my child, it is plain old not always nice kids. However, the older kids here will see to it that Liz begins to move away from being the princess, and into being plain old Liz...I will see she is protected.

Saw your note Lyle and Peggy and you are right, wish you were in Memphis next week too..

Love to our Seth and Anita, who are having a BOY, and Seth, have you started buying hunting stuff for him yet??? I have a pile of little hunting clothes I may try to bring you next week, slightly worn but broken in and soo cute.

Please keep the families and kids in your prayers..the lists are busy with so many new members, so many kids with Brain tumors, and the other cancers I dont even try to keep up with. Let us know what you all need, the prayer group here is good, and we are glad to help any way we can. Hello to Dory, a new list friend from the Phillipines, with a daughter with a treated germinoma...not many of us around and glad to meet you on line. Keep Liz in your prayer for next week in Memphis, and that our scans be perfect...she is growing well, and looks good. Much love to you all, ma

Saturday, June 12, 2004 4:23 PM CDT

Hello All! We went to the beach for an overnight, and took Virginia, Liz's good friend from school and had so much fun....Liz and Va got along well, and Liz also went to the sand bar, and did better than a long time in the water. I am talking to BJ Riddick about lessons, and that should fix the water thing...we are looking into a Youth group, a picnic tomorrow to see if we like them. We are continuing piano, and checking out the local low pressure gymnastics. We talk a lot, lots and lots. Liz knows she is "different", and also knows she is moral, kind, a bit spoiled, loved and tough. The more we talk the easier it may go. Guess it just seems that while we are told, listed, sign and know all the medical side effects, of which there are a lot, an unfair amount, tons and tons......still, those we deal with, as Liz is alive. The social things we arent told about. We discover them on our own. Just one more really unfair thing. It all keeps on, and the rainbow is the promise of a good life at the end of all this...that, we will get to. That, we know is out there. So, as Nita advised, we go back to day at a time, and we cry where the kids wont see. We ask the older ones to help her become more "normal", and also protect her. We also try to help them with this whole delayed stress thing that is hitting us all, they have also had their own effects, from the worry, fear, and whole gamit to being sick of Liz getting special attention. So, Jay and I try to balance it all out. Your notes are much help, we need them and hope they continue..

Monday, June 7, 2004 6:49 PM CDT

Too long, sorry! Been very busy, but not sure with what. Rebuilding normal, I think and spending some time trying to figure out what that will be.

Had a good weekend at the beach, with Vic home, Julia in and out, Becca there and her friends, my parents, Joe and Nancy, and Jordan..Jay down on Sun late. Saw cousin Nancy and Craig and they look really good, great! and are in Williamsburg part time in a new no maintenance carraige house, and the beach in a House Beautiful remodeled condo, oceanfront, and it is beautiful....Craig sells the furniture, but I think Nancy picks it out. The Beach is very intact, not bad from last years storm. We could use a larger driveway for all the cars in and out,!!! but it is great.

All ok here. Vic home and that is so right, we are sure it is the best thing. Having him here has been the best thing this year. Julia here and commuting to N News and taking Bio, and Becca home last this week from her minimester. So, the big kids are good! Liz is out of school, and had her end of year party. She is happy and we are going to learn a way to manage all the radiation side effects we are seeing, mostly, and frankly I have been so sad I just cant do this here....but, she does not do well in crowds, has few real stick by her friends, and the kids in the class seem to often find her invisible...and she relates to adults and not her class...I really saw it last Friday at the parties, and while I spent some many hours in tears, Now of course I am on the road to a PLAN...you know me, if it can be found and figured out, for the kids, I will do it...Jay of course too, but I do the research. Anyway rads, and BT kids have a near universal history of growing up with social difficulties, in relating to kids their age, crowds, and being alone. I have had a discussion on the Ped Brain Tumor list which is the only place to go, as they understand and frankly some very few here do, most other parents are getting their kids to the top of the social heap, and if yours is on the bottom, tough. I have also begun talking to my friend Nita, down the street who has a survivor daughter of 30 years!!! who went through the same thing...she was brain stem and had cerebellar mutism, relearning all the basics, and Nita has in just one short talk been lifesaving....Liz will make it through, she will be intact, and we wil support her, protect her and push her to do what she can..and not push her to be what the other kids may have been and she wont be..which will be the one to have crowds, and go out all the time. Still we will make her strong, independent, and happy with life, and sure of herself and her role here. Just be warned, the next years are going to be very hard and not fun for mom and dad, and Nita assures me Liz will be more resiliant than I will.. So, today Liz had a couple of friends that she went to their house knocked, they came over, and they had some fun. We will make our way. Thank you Nita. I have a close and old friend in need of confidential prayer, so pray for understanding for them, if not with a name, a need. The list is funny these days, lots of relapse, hard times, but we are a strong group..pray for a cure, that is really all the answer there is. Kay Gillette is still out of town I think doing radiation. Ann Powell is in rads and chemo, and determined to be fine., and we are good.
How are all of you???? Much love ma

Friday May 21, 2004 8:52 PM CDT

Jayne, thanks for letting me know the color was hard to see, and with Liz and her eyes, I should have thought twice!!! Good grief. All well here, relay tonight and Liz is soo excited to walk, and has Virginia coming over to have pizza and go out with her.. It will be so fun for her, though I admit I find it very very hard. Who would have thought we would have had this journey in life...and while we would learn so much along it all, believe me I would trade it in a heartbeat for routine. We have worked so tirelessly to make the very best of it, and have insisted on remaining positive, upbeat, and we do find joy in so much of it...the people we met are so special, we are excited about seeing Matt and Nancy this June when we go to Memphis, we have really had much good out of it. Still the fact remains that my daughter is a cancer survivor, and with only Gods choice and our wonderful Drs and our family's support, she will remain a survivor..but her life is so very changed and most of it frankly not for the better...hormones, children, relationships, childhood....so much. We go along daily knowing how it has affected our other children, and Jay and I, and her grandparents....we are all brave, but at times like the Relay, I must tell you, the tears are flowing. Guess I ofen wish for one day we could just go back...but since that wont happen, on we go. All is fine really, just a bit tired here, and a bit of pre MRI jitters. Liz is good. Her life is good, and she doesnt know the difference. She and her brother and sisters are total inspirations the way the take their lives and rearrange, and have such knowledge of life..they are teaching me, for sure. Keep our list friend Mitch in your prayers as his son has relapsed for the 2nd time, after BMT, and this is very bad news, few options. Neena and I are getting together next week, and I know you keep her in prayer, as she misses TAylor so much. Jays old friend Scott Davis just let us know his wife is undergoing treatment for Breast cancer, so please keep Barbara close,...I have a very interesting story about a friends daughter, for another day.. We are good, school is nearly out, and Vic is moving in to exams, please keep him in your prayer. Much love to you all, ma




Hello All!! 2 Weeks of school left, another year gone by, Praise God....I cannot get these years to go fast enough, just a couple more and I will feel so much better to be further along. Becca at school, doing great, but we miss her. She is up for minimester, taking some class on womens studies. Julia here, taking Bio. 107, and now working most afternoons. Vic out in 2 weeks, and I cannot tell you how it will be to have him home. Once we decided to do this, we could immediately tell it was the right thing, no matter what school we find for him...public, private, what ever, we miss him.....talking every night, seeing him sleep, drive, with his friends, hanging out. It is time and the right thing. Liz is doing well, getting taller, and very slowly gaining weight....eating lots now, for the first time in so many years.,....finally!!! We go to Memphis June 21, and just found out Matt and Nancy Noyes will be there with us!!!! So, that is sooo exciting., to see them and be together. I am arranging our flight out so we can have one night together, we overlap by a few hours. We meet with Dr Merchant on Monday, late, and have our scans hopefully still Mon before we see him, No schedule is set until we get there, so we will let you know.

All is fine. Jay out of town for business, again...home tomorrow night. Friday is the Relay for Life, and Liz will be walking the survivor lap, for her 3rd time....first year, she was inpatient. Pappy will walk with her this year, and that will be nice, maybe not for him, but for Liz I guess. He is doing well, by the way, and at his 60 year college reunion now. Will let you know how the relay goes, am sure it will be great. Please sign in, we need to know you are out there...and how you are all doing. The prayer list is endless, Liz's list friend Meghan is really needing prayer as her spinal tumor is compressing her spine and really becoming difficult. Our Insurance Case manager's daughter has been to MD Anderson, with a BT, and needs your prayer, as does our Ann Powell, Kay Gillette, and also, I hear Kathy Pond.. the list of kids is just too long,,donate to research, as much as you can..
Much love to you all, MA

Sunday, May 9, 2004 12:11 AM CDT

WOW, 10 days gone by...long time, no update, sorry! Is often harder and harder to do, so many still getting sick, and some days I just cant face it. Our Liz is very good..she looks great, and is looking forward to the end of school, and summer. She is growing and now her sisters are home, her appetite is a bit improved..so, that is good. School is good, and she is making friends. Julia and Becca are home, or at least out of school, Julia taking a summer class about 40 minutes away, and Becca taking minimester, but now is in Florida for a very short visit.. I think she could have stayed all summer if she could have.!! Loves to go to visit Jayne and Jim..they are good to her, and I think she is a bit like Mama Jayne too, fun, wide open, and loves everything.. Julia babysitting, working, and doing school. Becca will be home in about 5 weeks from class and then will do an internship either with St Jude or Kings Daughters, depends on a couple of things.

Vic has been accepted into Nansemond Suffolk Academy for next year, where Liz goes. So, he will be home, and I will admit to being in tears the whole afternoon I found out, just for the joy of KNOWING he will be here. Becca put it in perspective, when she reminded me that his last 4 years have been hard, with Liz being so sick and him really coming last on the list for 2 long years, where he got very little time or support really from us...girls graduating and all that. Then, she relapsed, he got into Christchurch, we left for several months, and 3 days after we got back, he left.!! to a school where he is totally on his own..so, now is his time, and we really intend to help him do well.

Please keep all the kids in your prayers. The BT list is so busy, with at least 3-4 new members every week, and we have had several children die this spring, it just never stops!! If you can get to other caringbridge pages, spend a morning following links, and you will see the tremendous courage, love and grace, but it is just so so sad. Our Kathy in Florida needs positive prayer and my friend Ellen, and her Sammi, as they wait to hear MRI results, same location as Liz, so a "higher" risk surgery for sure...she has had good Drs and found Dr Allen early on. And, for us, as we are about 1 month from our 6 month scan, and I am already getting so anxious...getting all straight, and set, and also realizing how truly hard it has become to make any plan...oh well. Keep our Vic in your prayer as he finishes up a really hard year and we simply cannot wait to have him home. Penny Dorschel is doing just great, but remember her new hip!!!

Keep in touch, we miss hearing from you all. Much love ma

Saturday, May 1, 2004 6:47 AM CDT

Well, took me long enough!! The trip went so well. Drove up on Monday evening, a bit later than we had hoped, and Becca was waiting so we ran out to eat, and then tried to get some sleep. Tues. am, we met the St Jude rep, and Carson and her mom in the lobby, and caught a cab to the Office Bldg, where there was a crowd of St Jude people waiting .....also, the lobby folks, and PR....we went around the security, and right on in. We met Mr. Shadyac, who is outgoing, and very pleasant and the handlers then took us in to the hearing room where we had front row seats, so the girls could be right behind Marlo while she spoke....picture opportunity. We heard several different groups testify, needing large and small research money for obscure, and very dreadful illnesses, all totally justified. Dont know how the committees make their decision on who gets money. Then, Marlo came in with the rest of the St Jude group, and also, yes mom, Phil!!! who wandered around taking pictures for her... Her speech was great, and she talked at length about our Tom Merchant, and what progress he has made and why they are building this new research and treatment building, shared research, saving kids,,,,she does a beautiful job. So, then many pictures in the hallway, and more pictures, which if I can figure it out, I will post here... did an interview with a couple of papers, and Liz and Carson were in the Memphis paper the next day front page. Anita let us know, and the pic of Carson was darling....lots of pics with Marlo and the girls, and one is on the St Jude web page, as they really use her with kids. Then we took the underground train to the Capital, and raced through there to a private room for lunch, more talk, smoozing, and once, Marlo wandered out of the room and came back in with John McCain!!! which even I got a thrill out of....by now, it was 2, and we had smiled all we could, so we headed out, and got Becca on the road. Becca by the way, looks wonderful and really had a good time doing all this....got a cute pic of her with Marlo for her Up-Til-Dawn at JMU. It was great fun, and we are honored to be able to do any fundraising for St Jude, as they of course were so good to us. We stopped by ChristChurch to see Vic, who played a great Lacrosse game, and we ran him out to dinner...Jay and I are counting the weeks until he is home, and home for good. And, we think he is looking more forward to being here as well...he has had a difficult year and we cant wait to have him here.
Liz loved it all, but a bigger deal was Friday, when I dropped her off at a sleepover, and she ran laughing upstairs with 10 other girls to go to a movie and spend the night..she was so excited she could not stand it, and it is Sat am, and she has not called, so......it is a total treat to drive off and see her run to play with her new friends, and to know she gets along with them well, and is having such fun. What a gift.

Please keep Savannahs family close in prayer, as she "got her wings" yesterday, peacefully. Ann Powell is still home, having no company, her kids are with her, and no one is calling or stopping by at her request...from the little we hear her time is very short, and it is too much to take in. Kay Gillette is either at Duke or in Atlanta, but I am not sure right now..so much hard news recently.

Julia in final exams, and gets home this next week. Becca in finals as well, and gets home just after Julia. Relay for Life coming up, and Vic out in early June.,.summer is close, and that is great. No other real news. The families are fine, we will call Penny today to see how her hip is doing, her new one, that is..I have called a couple of times but find her hard to reach, though I dont let it ring but too many times, as I hate to think of her running to answer....

Much love to all, ma

Tuesday, April 20, 2004 6:37 AM CDT

Hello all! Hope this finds you well, and having a good spring, as we are finally. Loads of yellow pollen, all over the place....our Garden club historical tour is this week, we have houses open all over Va., and it is fun. Glad the sun is out for that. We went to see Vic this weekend and that was good, he is great, played a good lacrosse game, gets bounced to the ground a lot, but right back up. He did have his prom, and we will post a pic. when I get one...the girls were at the game, he went with a good friend from school, and they had their nails done, hair, etc etc. Was fun to see the giggles, we miss that with our big girls gone.

Liz is good. We have some fun news....Got a call yesterday from the St Jude Memphis office, asking us to go next Tuesday to Washington, DC. Seems Marlo Thomas just got scheduled to address Congress, and ask for $20 million, to go to the new St Jude rad/onc treatment research building....it will cost $80 million, and we have seen the building plan, so she is asking the govt to kick in some. They need families to go and be there and then go to a luncheon!....so, Jay, Liz and I are of course going, and pretty excited about living close enough to run up for it. We plan to go up on Mon night, and home on Tues, as she speaks mid morning, and then there is the lunch....should be very interesting to watch this. They dont have details yet, and will get with us later this week, so will let you know....with all the Iraq stuff going on, we are planning on going but know it is also all "iffy". Will be really interesting, and of course, we will support St Jude any way we can.

Girls are doing fine, getting ready for finals, cant believe the year is about over. Seems to have gone soo fast. They are both doing summer class, to get ahead on their classes..Will be a busy summer with all home but a good one, everyone here, will be quite an adjustment for us all! House full, laundry, and all the different food things going on....ohh man!!! Keep in touch, and there are so many that continue to need prayer. Savannah, who is becoming very close to her end here, Meghan, Lizs email friend whose tumors in the brain and spine are growing again, Sammi, who waits for treatment decisions, Kaye Gillette, as they make treatment decisions, and Ann Powell, who is in Charlottesville with her second cancer, not doing too well at all. Way too many, young and old. Also, our sister in law, Penny, who had her hip replaced....she has been out of her room lots, as I could not get her yesteray at all!, but think she is going home today....and doing well I am sure.. So, we go to Washington to support research, ...keep our trip in your prayer, that we get to go, and that the money will be given in a time of heavy (and needless) war spending...Much love to all,

Friday, April 16, 2004 4:49 PM CDT

Hello, and sorry for all the slow updates....know it means we are good, and life is rolling on! Jays sister in law, Penny had her hip replaced today, please keep her in your prayers...she is healthy, and will do fine, but it is not a fun day for sure.

We go tomorrow to see Vic for parents weekend...and see him play Lacrosse. He then is taking Janie to their prom,and that will be fun to hear about. We will not stay to see them dressed, and am sorry but do have to get back Sat night. He is doing well, and we are pretty sure will be home next year...we are glad.

Liz is good, and has Virginia over to play, and she is a really nice friend who lives down the road in Franklin, and is originally from Georgia, with very nice parents. We are glad she and Liz are friends this year. Liz got a letter from our representative about the article in the Childrens Hospital magazine about our "Lizzie Trust" that has been set up. We have been amazed at the number of people that read that.! That is also where Becca will be working this summer, or doing her internship...will be fun. Julia hopes to volunteer some with the nutrition folks as well. One of the Vice presidents is an old friend of mine, Beth Duke, and I have known her for years, since we took a really fun trip years ago to New York together. She is top notch and will be great for the girls.

Please keep some people here close in your prayer, in addition to Penny, who did well in her surgery but now needs to rehab. Our friend Ann Powell, the school college counselor, and neighbor, and a 25 year cancer survivor, has been admitted and is on her way to Charlottesville, with a very agressive and fast cancer of the chest , which is compressing her windpipe and throat...the prognosis for any survival is pretty grim, and we are all devastated. Please keep her close. Also, Kaye Gillette, down the street has been diagnosed with a brain tumor, and is going to Duke soon for radiation and treatment....she is doing well from the surgery but has quite a road ahead as she battles this.. I have met with her daughter Jan and given her all the research I can, so they are looking at a great treatment center, and they are a very special close family..

We are also so very thankful for our friend Steven, in Nebraska and his recent CLEAR scans. We knew they would be, but thank God for it...he is going to always have good ones, he just has that feel about him. He is a Sr this year, and going to college, and is doing so very well....our friend Sammi and her mom met with Dr Ĺllen in New York and got yet another opinion, and now will have to make a decision about what course to take...Keep their clear thoughts is your prayer please. Dr Ĺllen, oddly enough, thinks it could be a germinoma, which would be why I picked her up off the Ped. Brain Tumor list, as God plans our support systems. How it all works out is so strange...But, they have to debate surgery, yes or no, and where to have it done....big decisions, and we send them strength. Savannah still struggles, and our Maxie in Amelia, whose grandmother is having a really hard time without him...we "talk' by email. Liz has a pen pal, Meghan, who relapsed this week in the spine and has new spots in her brain, please send much prayer for her, she is only 11...I have not talked about it yet with Liz but guess will have to.

Summer is soon!!! We cant wait to have all at home...will be fun. Please keep in touch, and bear with me as I dont update, some days it is just not happening. Life here is great, and while we are right now surrounded with a lot of saddness, I try to keep it outside...please keep in touch as we love to hear from you all!!

Lisa, we are praying for you daily, I do think you check in. I think of you so often.

Much love to all, ma

Monday, April 5, 2004 6:57 AM CDT

Entries are slowing down!! Lots of things going on, just regular stuff....work outside, school things, Liz having company over, and our hoping and working on gettng Vic back home next year....he is loving boarding school, but we miss him. We are working with the girls school, Nansemond Suffolk to get him there, and while it may not be easy, wasnt for any of them, at least he would be here, and also, we would have some control....Now, we usually really know not much about how his week went.

Liz is good. She is very stubborn about food, and eating what she should, so is gaining weight very slowly...has little hunger and likes little food, so we are there....also, showing signs of more stubborn about other things, and they are teenage things, and also things that other BT parents have noticed...radiation changes??? We dont know, but U. VA is working with our Ped BT online group to study some of the family and parent needs and these are things they are studying...so, good. There are so many issues besides survival, though that is a big one...and we have now passed our usual 3 month scan time, as we move to 6 month scans, and I do not like it!!! Much preferred the 3 month schedule, and am very attuned to it after 3 years of doing it....was nice to know. We go back in June, and it will be good. She is doing great.

All are coming home this weekend. Julia having lots of tests, and she works very hard....Becca also having loads of papers, as she takes a lot of hours, double major, and keeps her grades up well too...they are both great girls, and work lots...will be good to have them home this week.

Easter...our best week. Here is Virginia, we have daffodils up, and trees budding and it is cold, but nature thinks spring is here....so, it is so pretty, ...we are getting our garden going, one more year, and hopefully this will be the year it does welll......it has suffered the last many years. Hate to plan, doesnt work well it seems.

We miss Seth and Anita!! Need to call them, to see how they are..time has passed so fast, and we think of them and mention them so often. They will always, even so far away, be such a special member of our family.

Heard from Sue and John, then her email deleted when my computer cut off....they are good, and she is retiring early!! My cousin Ann's husband Norman is doing better, and mom and dad are in their finished room now, and it looks just the same, finally. Now just have lots of yard work. The neighborhoods are getting all the final debris out now from Isabel, for spring cleanup...piles out on the road again. Keep our BT friends in your prayer, as Savannah struggles to live a bit longer, and several kids have died this past week...the gliomas are really difficult tumors. Our list on line is growning so fast...it is good to see new families get support, but the no. of kids with brain tumors is big...there are lots out there, spread around. 2 more adults in our city were also diagnosed last week, how is that? What is causing all this/???

Please keep in touch....is great to hear from you, and we are getting more involved now in other things, so we miss the calls, and the mail....keep us posted. and our friends in your prayers. Have a blessed EAster week. Much love, ma

Saturday, March 27, 2004 6:31 PM CST

We are good here. Liz spent the night out, at her good friends Gabrielles, and they had a birthday party first, then slept over, and Liz had THE best time. She is so good, fast asleep now, so tired. We are terribly blessed, and though she is slow to gain weight, she is so alive, we cannot ever say how it is every day. Vic is home, and doing well...we are having him tested and hoping to, though it is not common knowledge, to bring him home next year...it is too hard having him gone. Will see what works out. We just miss him. Becca is great, and Julia is too...planning the summer and jobs, internships, classes, etc....we are going to have a great time and we will live well

It has been a terrible week on the BT list, and the caringbridge pages...there is so much death and kids struggling to live through fungus, bad brain tumors, and multiple bone marrow transplants...a couple of real special kids are leaving us so soon, and it is horrible and unfair and hard to know about...but we must know as that is such life. We also had a friend of mine loose her husband in a very brutal hunting accident with an accidental shot to the brain, and the funeral was hard...(we did ride on my friend Dana's bus, which is much nicer than any rock star, I mean full size, black, leather, kitchen, bath, we look like Elivs pulling up bus, so the trip for 5 hours was nice)...Alva is only 41, and has very young sons..she has good support here, but it is very bad. At least it is nice to be able to cry, but really, the why's often overwhelm the answers. The answer is the complete strength most parents find in God, and our own very individual and sometimes unorthodox relationships with God, Jesus and how the world works....but we know how we get from day to day. Please pray for Savannah, Maxie, our new friend Sammi as she waits for surgery with a tumor in the same location as Liz's, and all the others. This has been a rough week, and rough does not mean our stock dropped. Please keep us up on how all of you are, how well you are doing, and what is going on...spring is here now, and we are glad....we want to hear from you all!!! Sue, how are you and John????
Keep your prayers strong. much love ma

Monday, March 15, 2004 6:08 AM CST

What a great weekend, and spring break week. The kids were laughing and so relaxed by the end of the week, it was fun to watch. It takes Vic a couple of days to feel really at home, and also, for Liz to get used to being one of the crowd, rather than The crowd. They had fun...we took Vic slowly back Friday for Lacrosse camp, and then Julia came home Fri. evening. It is great to see her, and have her here, though she left early Sun to go to Florida to see her grandparents there, she had not been in sooo long. Her flight was great, and unlike Becca she got to Ft. Meyers, and they are I am sure shopping and sleeping late today, then getting nails done, etc. Julia will love the weather there, she is not a cold weather girl!

Becca did make it home from Mexico, safely and she had a great time, and no trouble.! She has good pictures, new silver jewelry,and learned to barter, claiming her blonde hair didnt hurt in getting a good price! To be young again!!!

Vic back at school, and we miss him. Easter break will be great.

Liz doing well. Was off yesterday to play with her friend Virginia, and she is a nice girl. She is navigating the social world slowly, and just learning about the girl stuff that is going to happen...had an old friend that should have been taught better act really stinky, so we are talking about it and teaching how to be nice, and also, move on from friends that are destructive and unkind...BT kids have less reserve, and radiation makes more impulsivity. My theory is they are so used to adults and brutal honesty, that they loose the judgement for what is untrue, so takes longer to figure out which kids are insincere. Enough of that, we are doing well.

Keep our new friend Erin and her family in your thoughts, as she has had to come home from college, and faces a difficult time, with a BT that is not as agressive as just in a really terrible location, and things are slowly grim....her parents tried to let her go some, but her health just got to bad too fast, so she is home, age 19, and struggling with some bad news. Her dad Jeff is on our BT list, out in the midwest.

Keep in touch!!! Let us hear how you all are, we miss your news.

Love ma

Wednesday, March 10, 2004 5:34 AM CST

Thurs, briefly! Great break, so good to have Vic home and laughing with us...he and Jay fished today and had a beautiful sunny day to do it, up again in Franklin...Liz and I got nails done, by what else, a new nail tech that is here from California, beginning a new career, from hemoc, a microbiologist/hemotol. lab person, in oncology, who lost her younger brother 23 years ago to, what else, you got it, a brain tumor. Too small a world! But our nails are beautiful...has been a perfect week, and Julia is home tomorrow, but Vic goes back. Becca back to JMU too from Mexico...cant wait to talk to her. Julia has been working so hard, and will do great, but needs to rest. Love to all, ma


Sorry, been a while!! We have been busy, getting on with LIfe!! Vic, and Liz are home on spring break, Becca is in Mexico, and yes, she has called, and is ok, staying at a nice place, and likes it just fine....will be glad when they are all back at school. Julia comes home Friday!!! and then goes to FLorida to see her grandparents, for a few days...then home, to sleep late, and hang out with us. Our breaks are usually spent in lots of late sleeping and eating, and being together....many many kids in town have families that go on major trips this week, but with 4 kids, we felt spending thousands of $$ for that just a bit too much for us...so we have "boring" breaks but the kids do get rested, bored, and have time to do nothing. Which is really what I think they need and lack during most of the year.! Today, Vic and Jay are fishing, up on the Nottoway River, and Liz and I are going to Norfolk to get her hair cut by my Ella, that cuts (and colors) mine....she is really good and did the cute cut in Liz's picture. She also, oddly enough has a brother that had, what else, a brain tumor....small world? We are just going along where we are led, and meeting the most amazing net work of people. Am working on a Survivors day with Kings Daughters Hospital in Norfolk, covering their survivors of the oncol. unit for the last 25 years....seems I am connected to so very many that dont survive, it is great to do something with the ones that live and go on to a life...should be a wonderful thing.

We are good. It is so great to have Vic home. We miss him so terribly when he is gone....I told Jay it is time to look at finding a school near us, is too hard taking him back when time....will see. We want to have him here every day, while he is young. Keep Julia in your prayers, as she finishes her big tests this week and travels home and to Florida. Liz is in the parade in Norfolk Sat for St Jude, riding in the car and waving...our poster child!! Becca will be flying back to Baltimore, and then driving to school, keep her safe. and Vic back at Lacrosse camp Jay is fine, and working lots, but also we are making our list of to-do around here. Keep Lizzies Dr Merchant in your prayers, as we go back in June to rescan., and also, Matt, and Steven, as they are also scanning sometime soon too. They are still on a different schedule than us, so we dont see them but we do keep up...our extended family. I cannot wait until I am old, and can see them all grown up....time can fly by. Much love to all of you. Mom and dad are in their rooms, nearly finished, and tired of it all.....has been difficult for them, but it looks great,and they did well. My brother Bart has a new condo in Chicago, and is trying to sell his old one....more space, more edgy neighborhood, and a fire place, deck, and parking space!!! (no car though). Keep in touch, we miss you all. Ann Parkers husband Norman has been sick, I will call her and update you all....pneumonia I think, will let you know. Love ma

Saturday, February 28, 2004 7:27 AM CST

Good morning all!! Is sunny and so pretty here, just great weather finally. Know it wont last, but for now it is a treat.

Colonial Craft day was a great success....Liz is a beautiful colonial girl, and she wore the dress that Carol made years ago, and Alice, Becca, Julia and then Liz all wore it...what fun. She had a candle shop and gave her talk beautifully and of course, all the kids got an A, unless they just did nothing, and they all did well. Liz knew every song, poem and dance. Was such fun, and her pediatrician has a son is her class, and as Laura said, it makes you just want to cry to see how well and good she looks and is doing. Laura knows her whole history, and is always thankful as we are.

Vic is beginning Lacrosse now, and having lots of practices....he loves it. That is a fun season, as we get to see his games and see him more often too really, so we like that. He is happy there, but we are still missing him, and franky would love to find a way to have him here closer to us all. I am sort of looking at options, will see. There are lots of good options for after high school, but not many for a kid with LD, who loves sports, in high school...

Girls are good. Becca does not feel great, a bug of some sort....keep her in your prayer now and also when she goes to Mexico. Julia doing fine, her roommate is a bit difficult, but is a learning process and the rest of the year is short, so will see.

Jay in Vail, on a ski business trip. He is good, and having fun, but will be ready to come home tomorrow. We are here being messy, and today will work in the yard some as the weather is great. Much love to all, keep my parents in prayer as they travel from Florida home, by way of my uncle Bob, in N. Carolina. Jayne and Jim, time to plan a trip up!! Will be a year in May, so we are ready for a visit!

Love to all, ma

Sunday, February 22, 2004 8:36 PM CST

What a good weekend...all went great.! Vic home, with his friends, and so good to have him. He looks great, still, and other than needing a haircut, ....oh well. Jamie and Timmy were here with him, and his birthday was good...several days of it really, getting money which he was thrilled with, socks, socks, and more socks, as he uses disposable ones at school I think. Becca and Julia here, and they are doing well, both look great. Becca getting ready to take her trip to Mexico for spring break, look for her on MTV....haha. Julia going to Florida for part of her break, and really excited about spending time with Mama Jayne and Jim....she cant wait to be warm! and see them. Vic will be home a few days, and then has Lacrosse camp....Liz will be in the Norfolk St Patricks day parade, in the St Jude Dream home car, waving to everyone....the poster child for St Jude for this area. Thats ok, we would do anything for them,. really..and unlike KD, there are few in this area. We dont fundraise as much for KD, but only because they have many more kids here. This area is very fortunate to have such a good regional childrens hospital...and we were lucky to have found a way to Memphis when we needed to go.
We had cake, presents, cooked out, and the kids tried to sleep late, but Liz is not a late sleeper, so got them up. Becca gets up with her all the time, but Julia did sort of, as she and Becca went to the Eastern shore to look at bridesmaids dresses with Alice, who is getting married in the late summer!!! My girls are really excited about it all, and love the dresses, so had fun. Vic had a good birthday, and having all home is what we like. We have always had a house full of lots of friends, so we miss it and love it. However, the routine is good too, but with Liz, she misses the fun of all being home...so it is great. Jay and I would have them all here all the time if we could. Time has gone fast.
Keep in touch. Mom and dad leaving Florida next Sat, and hope to get to Bob Nimmos by late Sun I think...will be sure mom calls him. Her phone is spotty down where they are, so she doesnt call much. Keep all the caringbridge kids in your prayers, there is so much need out there. The Brain tumor list I am on gets many new members each month....and it is all so hard. They all need so many prayers and support, and they have such Faith. Especially think of Neena and Kathy Charleton, and all the parents that have lost their children, it is so very hard. Their journals will let you know day to day how they live,and their strength is amazing, and also, the grief. We are all just there to support them, and also, running as fast as we can. All these kids love life, and God welcomes them to Heaven, as they surely keep things lively there. Much love ma

Friday, February 20, 2004 6:38 AM CST

will update really fast, all is fine. Pick up Vic today, for his birthday, he is bringing Timmy Wilson with him, a friend from school and also, his girlfriend Jamie Griffin is coming later tonight. Becca is picking her up near Richmond....Julia is coming as well, so we will be full, and it is great.! Bought tons of food, and need to make a cake tomorrow....will have a birthday cookout!!

Much prayer for Beccas friend Ginny, who lost her step mom to a brain tumor this week....they were not real close, but is still hard. Keep our new friend Karen in your prayer, as she has her chemo and treatment for a mixed germ cell tumor....a little bit harder to treat than ours, and ours was bad enough. Think of the kids today on the road, will be glad when they are all here. It is go good to wake up in the morning when they are all home, and know they are asleep....the years are so fast, and I hate that, but then waiting for the time to pass that Liz is better, I wish it could just go away overnight, and it be 5, 8 years behind us. I know Tom Merchant's answer to how long, ...no statistics on relalpse, these tumors just dont after "good" radiation. So, still.

Love to Jayne and Jim in Florida, you need to plan a trip up, it has been a long time. And, my parents, on vacation, miss you and please drive carefully....and the house looks good, paint done, brick getting there, and hopefully wont be long!!! Much love to all, ma

Sue and John. good to see you sign in, keep in touch.

Monday, February 16, 2004 3:48 PM CST

We have long icecicles, and it is cold here!!! Had another snow day, and today was already a make up day....they will be in school forever!! Oh well, having Liz home is really a treat for me, and Jay and I watched her this weekend, when she came home from her friends after spending the night....she had a great time, did NOT call me, and took all her meds on time. She laughed and laughed, and we are truly the most blessed family possible...when life goes along as it should it is a wonderful thing to see. Was hard taking Vic back, very hard leaving for us, and then, terrible weather coming home, especially as we have major bridges here going anywhere...the James River monitor-merrimac bridge was a real mess, total ice....Jay is good in the weather, and my suburban a good car, so we did fine. Liz slept and when she woke up in the car, she said we must have a foot of snow!!! We didnt but still was pretty.
Next weekend is Vics 16 birthday. 3 Years ago, his birthday was not so wonderful....but we were at least on our way to knowing we were having surgery soon...was just 4 days before we went to Hopkins.! Hopefully this 16 birthday will be better! He may bring some friends, which is great, and I think Jamie, his girlfriend from NoVa is coming Sat as well. We hope to make it special.

Keep in touch, miss you all. Jayne and Jim, we are having trouble catching you at home, and my parents, have fun in Florida! Much love ma

Friday, February 13, 2004 9:17 PM CST

Close, Close,Close!!! Nearly 50 pounds, but not quite.!! Darn ...however, more growth, and more gaining, actually Dr Satin Smith is very pleased with the gain and the growth....the usual weight gain is under where Liz is, and she is nearly right on the low side of great catch up growth. Best news is, her bone age remains about 7-8 years old, which means by her bone maturation, she is young...and has lots and lots of bone growth room to go.....by the bone age chart, she is about in the 50%, so as she catches up, she will catch up well and get good height. If her bone age were near to the age bones are fully mature, it could be difficult to get lots more height...so we are in good shape, and she will contine to grow in a healthy way. We can surely be patient with this after all the terrible rest. Even more important, she remains so totally upbeat, cheerful, and fun....twitching all over the office. She did ask Marta SS when she expected that she would ever get ON a growth chart, rather than below one....of course, no answer for that one. Good visit, no labs, she looks great and is doing well, so all are pleased. Back in 3 months, love the Chesapeake office, fast, nice, easy to get to, and shopping close by as well!!
Keep in your prayers our BT friend Tanya, and her daughter Karen, as they do their second round of chemo for a non-germinoma BT, or mixed germ cell, a more difficult one than Lizzies.. Still the chemo is the same, and this round is that terrible cytoxan....she is breezing through it all, down in Georgia. Will surely get more difficult, and they have 4 kids, and need some prayer.
Hope you are all well, and good to see folks sign in, it is a chore, I know but so nice to know who is reading. Keep Neena in your prayer, as she struggles, and I am really at the point of being no help to her at all...she is in a grief group, but really, when I hold Lizzies hand, I just cannot imagine. So, hold her close. Thanks for checking in on us, and remember the links at the bottom, there is lots of need out there. Much love ma

Monday, February 9, 2004 5:03 PM CST

Hello All!! Had Julia home for the weekend, and that was so good, she needs to recharge sometimes.! Also found out a Dr there, from my uncle Bob, in case her throat continues to hurt. All is good with her, as she continues to love nutrition. Also, I read her book, and the first thing a nutritionist should do is the food diary, which that lady in Windsor did not do, so we will not go back to her...oh well.

However, today, and for the last couple of days, the scale for Liz has been hitting 50 pounds!!! which is surely an all time high for her.. after a couple of days we begin to accept it, so this week, when we see her endocrinologist, she will be 50 pounds, we are sure.!! That, is progress, along with the growth, and one more sign that life begins to get back to our new normal.


Not much more news. There is a brain tumor conference in March in DC that I hope to run up to, lots of big name speakers, including our Neuropsychologist, and several east coast big BT docs, so the list I am on has a group that may meet for dinner and to talk...we have met online so this could be fun...and we could learn a lot too. will see!

All is good here. Lots , LOTS of new BT kids all over, and it is terribly hard and sad to learn about it all. There are so many, and they all want to live so badly, and it is just so hard. Many of them have very difficult tumors, and they have very little medical hope, so please, in your heart hold them close as their families begin the looking for the right thing to do. I am adding a couple of links here, so some of you can, if you have time, browse a bit on the web sites of these very real families that are struggling with all of the treatment decisions, results, and frankly life and death.

Please keep our good friends the Stublens in your prayers as they deal with their very very special oldest son and his difficult time right now, as he is in a great healing facility in North Carolina, getting what they hope will be a good healing handle on his psych diagnosis...they came to dinner this weekend and it has been a very hard couple of months but they are head on, and found what sounds like a good place, near Asheville, and the healing Vortex's of that area.....Paula felt it, and I know little about it, but pray it works. They are very special to us. Matt, their younger son, dates our Julia and was with us daily when Liz was at her sickest, and Paula was one of our special 8th floor nurses...wish I could do as much for them now as they did for us.

Much love to all, ma

Thursday, February 5, 2004 7:22 AM CST

Will be a fast update....has been a while, sorry!! Busy week! Have been trying to get back into things, and find it still so hard for me...not sure why but not uncommon, so I move on.

We had Vic home for the weekend, and took him back on Monday, and it is always terrible for a couple of days, missing him so...Jay and I just hate having him gone. It constantly amazes me how hard it is for the first couple of days he goes back. He is doing ok, but not as well as he wishes, so, we are plugging along. Vic is a really good person, and we are so lucky and having him home a good thing, so while he is at school, we miss him. However, if he loves it and can do well away, that is ok with us.

Not much going on. Took Liz to a local nutritionist yesterday, who may be qualified, but has little bedside manner....will see. I am looking for the magic key that will help her gain, safely and faster..and also help increase her appetite, repair her brain, and contimue to heal from where that fungus was long ago.

Please all remember, 3 years ago, this week we saw Dr Weingart, at Johns Hopkins, thanks to our neighbor Dr. Foreman. Then we knew we would have someone that would help us, after Norfolk had given such a dismal beginning because of the location. We have come a long way.

Have been talking to a couple of "new" germ cell parents, one in Mississippi, with a 9yr old, who is about 2 years out of treatment. He had many more disabilities than Liz right now, and his surgery was done locally, in Mississippi. We are working on rebuilding his med. records, constructing a picture of where they are now, what the path was, and what the prognosis is for her son...and hopefully geting some sort of second opinion on what rehab options are. The other child is 11, and just beginning treatment for what may be a mixed germ cell tumor, which can be far more difficult to treat, but is certainly doable...they are just beginnning the chemo, and of course overwhelmed with the details..no surgery done there, and we are working to a possible second opinion there, as everyone should have that done...the brain tumor international list has been a great help to me, and I am so glad to be able to give some tiny bit back by phone calls.

Let us know how you are!!!! We miss hearing from you so much, so please sign in even if you just put your name. All is good here, and we think Julia is coming home this weekend for some R & R from the dorm. Becca is working hard on her double major and large class load, and getting a summer internship. Vic is beginning his new 6 weeks. keep in touch. My parents leave tomorrow for a trip to Texas and Florida, so keep them in your prayers as they travel the busy roads. They are well, and the house is really making progress!! with the painters, floor man, and brick mason there all in one week. It looks good, and they are so fortunate to have found their contractor, Thad Keyt....
Love to all, ma

Wednesday, January 28, 2004 7:38 PM CST

21 years ago, Becca was born! What a great day, and it seems like such a short time ago. She was the most beautiful baby, and what a doll, as she seemed to always be in a good mood. And, remember her Maria, and those Cheese sandwiches!!! I wonder if her Harrison called today, one of her oldest baby friends.
She is out to dinner now, and is having a great time. We miss her so, but it is appropriate that she is out with friends...Beths mom is there, and I am glad. Becca is quite a special girl, or now, lady, and she is strong, and always fun. Happy Birthday, Becca.


I know this am Jenny woke her, and then Mama Jayne, and then dad, so GOOD for them!!! Send her your love, and also, remind her that age is a great responsibility as well.

Much love to all, is cold here, and definately winter. Keep all these kids in mind, as we make more Caringbridge friends...it is hard, and so many of these kids are not doing well. But, we are, thank God, and love to all of you, ma

Sunday, January 25, 2004 8:59 PM CST

Monday, Jan. 26.....school is out! Cold, freezing weather, beautiful snow, car is covered with ice!!! Liz home, and playing all day in the snow, what a treat. We love snow days. Jay off to jail tonight, and Vic in exams, good luck to him, he works so hard. Julia did make it back to school this am, after hours and 2 days on the road...safe, thank Goodness. Thanks to her wonderful special friend Matt for driving and putting up with all those girls all those hours on I-95. Becca has all clases cancelled and is of course, at Massanutten, snowboarding!!!! Keep in touch, all is good here. Vic home this week!!!! love to all, ma


Well, 3 years ago!!!!!

The weather here tonight is much like that winter was....snowy! The week just before Becca birthday we got the diagnosis, and her birthday was so full of tears, but also of so much friendship, hugs, and tears in a group. I know my BT group understands the group hugs with bad diagnosis', and we did too, that week. However, all now is well, after a hard 3 years, and I wonder if we remember now things "used to be?"......

Becca is 21 the 28th of January.....this weekend we were with her, and Julia, and missed Vic so so much....He has exams and a closed weekend, and we are hoping and praying so hard for him to do well. I can tell you, that we have tried all these years to teach our children the values of love and being loyal friends, and I must say they are good people....they are kind, good, and caring friends. Now, I hope they also are good Christians, and can truly walk with God, as that is the most important .....the next step, I suppose.

Becca is great. She looks wonderful. Her apartment is so cute, and before the party, so clean....she has good friends, and is a smart, special person. If you are close to her, she does whatever is needed. For her birthday, they had a party...enough about that. Jay, Lizzie and I went up and went to the farmers market, bought lots of organic food, and took all that would go out to dinner. Then, they had a party, a 2 keg party, and we were unofficially introduced to the "ice Luge", which only can be done at a party in the cooler climates, and by a young crowd, that does not mind both germs, and messy drinks sliding down an ice block into which has been carved a groove that you pour drinks into, while you stand at the bottom and catch the cold stuff that runs down in your mouth....sound appealing????? Then, head up to JMU.....they have it going in the winter. She is 21, what can I say,.....they did meet us for breakfast, looked fine, so ......

Julia is stuck on I-95, in the snow...They made it as far as North Çarolina, after about 7 hours, in the 1/2 inch of snow. Lyle would laugh at us southerners, wrecking cars in the tiny bit on snow we have. However, after 7 hours, and no cars moving on the interstate, I told them to pull off and get a room...all 7 of them!! So, there they are, waiting for the morning. What a mess, but they are safe....The usual trip would be about 4 hours. 7 hours now, and overnight, and they are not 1/2 way....Thanks to Matt for driving, and all the others for being there to share the room. A big mess, these southern storms.

We are good. We are 3 years out , with clear scans, and doing great. Liz is fine. Jay and I are good, I am adjusting to life, and dealing with the it all. it is not easy, really, ever, or smooth, but whose world is? The small stuff is small, I just want life. Long, long and healthy life. Each day, God is there, and life is good. I just want lots of it. Nothing is promised, as you all know. We continue to be terribly blessed, compared especially with my BT list friends, who have much different diagnosis, by the Grace of one small cell that grew instead of the one that grew in Lizzies head. Why? That is the question that is unanswerable. I can tell you that 3 years out, we feel like forever. It seems like it has nearly always been like this. Jay is good. I feel constant uncertainty. Maybe women just take it differently....God is with me all the time, but with no guarantee of long life, just heaven...which is enough for all but me,. who wants it all to be perfect. Life is not perfect. Still, it is good. Today though, I wish it would be perfect one more time. Perfect vision, scans, but the list is endless, for all of us....no depression, LD, or DL, as Julia would say, all perfect grades, shapes, no worries.....it is what we have, and it is good. We are all so blessed....you are too, and I am sure you know it. See that Sue has signed in, and we miss Valla here so much....I hope you all know that. She was a great addition to the world. Bart, in Chicago, had bought a new home, and I am pleased, and proud of him for becoming a teacher after years in business. He will contribute to the world. Please sign in. We miss you all, and Vic, who will be HOME this week late. Much love ma

Thursday, January 22, 2004 12:21 AM CST

Hello All!! Dont you hate it when an update does not work?? Oh well, Aruba was great, very warm, sunny, and relaxing.. We had a wonderful time, and did lots of business too. Jay has some customers that were with us, and they are very fun, nice people, so the trip was great. We are, however, glad to be home. While it is great to get away, we really are so blessed at home, that it is a treat to be here too.

The kids are all fine. Becca looking for an internship now, for job experience, so .....Julia in nutrition, and Vic waiting for winter break!! Liz, well we are so lucky. Today was her colonial Tea, here in Virginia, we are big on Teas and doing it like the colonists did...they have to wear a Colonial dress, and hers was our cousin Alices', Becca's, and Julia's, so we pulled it out for Liz....of course, it is a bit too big, all over, for the little bit, so I took it up, and in....still, she came down today with some tissue in the top, to keep it from drooping too totally, and I then talked to her about catching up growth, and getting height, etc. soon, and also how the girls in her class will be developing and when she gets enough weight, they will add a med so she can get a figure....she could not believe that she would have to deal with one more med, and then grinned, and said she could always just use tissue....that is a great attitude.

We are good, so HOW are all of you??? Our life is good, but we miss hearing from all of you out there, please keep taking a minute to sign in, and let us know how you are, where you are, and how your world is. Wish we could see you all, much love ma

Sunday, January 11, 2004 5:01 PM CST

Just a fact worth putting...Jan, 2001, diagnoses month...our eye check, know it was on Jan 18, MRI on the 19th...one week from now. So, remember back, 3 long years ago, and know we have been so blessed with wonderful support of family and all our friends., the whole community, and strangers we have been so fortunate to meet and love. It is an amazing journey, and one that is full of such uncertainty and moving on no matter what. A radio show last week on cancer survivors described a diagnosis of cancer, and I feel it even more so for your child, as being like the infamous 9/11, only every single day. Parts of the day are surely like that, but most for us is now really filled with such success and confidence in God and the good of the world, and such growth in our faith..Life is so good, and also Heaven so full and so close.. will write later, but did want to begin to remember how very far we have all come. Also, dads psa is below any possible worry level, his treatment very successful, and he is doing well...what another great relief. Much praise to God for our strength and giving us the good sense to navigate through all this....ma


A great weekend...but really cold!!! Very cold!! Not above freezing at all, and snow on the ground, which for coastal Va is unusual! Vic off at his friends, Jaimie, in NOVA, and he is so sweet and having a good time. just hope he is not bothering Jaimies mom Tommy too much... Becca at JMU, and it is cold there, with most of her roommates back, and they are doing well...class begins tomorrow. Julia had class Friday and bought books, which lets her know why we do like it when they do well and make acceptable grades! As they do......is cold in Carolina too, with snow, and she is looking through her nutrition books and liking what she sees. So, Becca into her double major, and doing great, and Julia beginning nutrition....Vic has exams in 2 weeks.

Liz is good. She is working with her Mrs. B, who is her tutor at school, and is so good. Mrs. B is high energy like Liz, running around everywhere she goes...and loves teaching. She began work at school as a walk in volunteer, and has been with Liz since last year, and we are so thrilled to have her...she has gone through the last 3 years of math with Liz to catch her right up, and when Mrs. Riddick sees what Liz needs to review, she calls Mrs. B and they work on it....it is wonderful to have so many at the school that care so about our child, and helping her catch up and feel secure. It has allowed us the year without stress,and to let Liz be 11, and it is so so good to see her be her age again....we are not there totally but we have made great progress. There is a maturity that may just always be there, I guess these cancer kids, even beyond treatment, have seen so much life and death, and lived in such an adult world, that they remain mature. However, she is laughing and running like a kid....it is great. Becca and Julia swear she is too spoiled, but yeah she is....and as we go along, we are trying to work her out of it. It will come.

Jay doing well and getting house stuff caught up, and we go next week to Aruba for a business/pleasure trip...some off-shore company of some sort. Lizzie will be here, with a great teacher, BJ, from the upper school. I am sure all will be well,and she assures me it is not for long, to relax.....Liz assures me, that is! Keep her safety in your prayer, and of course, ours. All is well, and keep your prayer going for all the sick. Much love, ma

Thursday, January 8, 2004 1:18 PM CST

Well they are all gone! The girls just got packed and all left, and it is lonely here! Very quiet and very odd, after having them all back where they belong, right here! Our holiday was very very good, with the family being together and getting along so well, and we are so proud of the kids for working to do that. It cant be easy coming home to rules, and having to put up with so many, but they do great. Liz is spoiled, they keep telling me, and I know we need to work on that....it is just hard not to!! However, as we move further out of treatment, and into life, it will be more necessary to not have a queen....though she gets a kick out of being princess. The other Sunday in Church, Becca drew a picture of Lizzie, with a goofy face,wild hair, typical ugly pic. of your sister.....Liz laughed, and returned it to her......with a big crown.

Hope you all are doing well..and will let me know about it. We havent heard from some of you lately, and wonder what you are up to??? I know Jayne down in Fla. lost her addresses in the computer, so hopefully she is back on line...we missed them at Christmas, and know Julia is planning a trip to see them over her spring break. Keep us up to date on how you all are.!

Much love to you all, and keep all these children going through treatment in your prayers, and remember to keep your own family close, as while we are acutely aware of how fast your world can change, everyone should know it, and thank God daily for another good day... ma

Monday, January 5, 2004 7:06 AM CST

Good morning all! School is back in, and what a great holiday we had. It seems like the couple of weeks went too fast, and was perfect. Vic is back at school and had a good time at his snowboarding trip, though I will say the weather was very hot for it. He of course is fine at school,though we miss him too much. It is a compromise having him there, We just wish he were closer. Liz slept late today, of course, and was ok going back, once she got there was fine....that old word, fine again, but it means she will manage. Now, we count the time until spring break!! Julia and Becca are here sleeping and go back late this week. Julia for some reason begins on Fri. classes, oddly enough, and Becca a week from today. They are good, and I am glad they didnt leave yet, would be lonely. Jay is off with some business people in Madamaskeet, NC hunting.....business, of course. He is getting the to-do list taken care of quite well since he is not training, and that is nice. Now, I have my list also!!!

We go to Aruba in 2 weeks, and BJ Riddick will be here with Lizzie...this is a true business thing, and lots of talking to folks there, but I do intend to read in the sun as well. It is always very very hard for me to leave, and this time is no different...even with Liz doing well and no problem, it is hard to be gone...from them all!! The what if's begin, and then suppose one of them needs me??? Still it is for just 3 days, so, all will be ok I am sure..So, today I am walking and trying to not eat for 2 weeks to begin to get this nearly 50 year old body into some sort of good health.

Liz is doing her shakes, and now is making her own. I am trying to get her to take charge of it all, and that is one way to let her with the food...she just is getting very stubborn now too, and that is difficult for me. (guess she has been that way, which is why she lived through that fungus, just determined!!!)

Our past year was good. We had a year of fewer appts, and no medical crisis. Vic is blooming at school and also here at home, he is a true treasure of a young man, and is proving to be a person of good character, as we knew. Julia graduatied, and is doing so well at ECU....did I mention she got a 4.0 her first semester?? She is taking a more full load this semester, with her nutrition classes in there, but I am confident she has hit her stride...Having that average in the bank is a really good thing, that is for sure! Becca is funny, full of life, and has always done well...she got her first c, so dont you feel sorry for her....she is now having fun, and frankly, while we do want them to finish on time, and well, it was time for her to find herself there, and have fun....her first years were very hard, so to see her smiling and laughing all the time is so very good. Jay had a good year, and finished his first marathon for St Jude very successfully, under his target time, and was also a top fundraiser. Now, we are moving on and not sure of what will be next. However, for now, I am going walking with Ellen, and that sounds like a good plan to begin the day.

Great to talk to Betty, from Montana, whose son also has (had) a germinona...there are so few of us!! and is so helpful to compare progress. Much prayer for them this week as they scan and also travel in the snow....it is again 72 degrees here in Virginia!!! Love ma

Wednesday, December 31, 2003 2:28 PM CST

No News!!! We are all so good, and had a wonderful Christmas, it was , as Lizzie would say, "perfect!" Noone really had any major Christmas requests, so they were all surprised, and Christmas morning, all got up very early, in spite of the older kids warning LIz not to wake them.....haha. Becca was actually up first as usual, and then off they went. The entire Holiday has been so good, and relaxing, and you all know my favorite time is when all the kids are here at home. So, we have loved it. Some bad news, Vic got his learners permit.....so now, watch the road, as he is mobile.!!! No, really he is a good driver, and not nearly as scarey as both of the girls were, or are.

Becca is off to Raleigh for New Years with a friend, to visit and do whatever....I hate Holiday Travel, but what can you say? Julia off with a group to the beach overnight, and I am not in total favor of that either, but is a nice group, and I dont want them all here for New Years, so they go where they can all be together. I must realize the days of the little ones staying happily at home with us, playing games is just gone...Vic is here, and will "hang out", and Liz and Jay and I are invited to Ellen and Whitney for a small dinner with a group, and the kids. Then, we have Church at 11, and then a dinner at 12....not sure I will make that, as Liz will no way be up til then.. Tomorrow, Vic leaves for a ski trip, and then he will head right back to school, so he is gone, and I just hate it...it is not right when he is not here, though I will admit it freely that he is happy at school and really has good nice friends. His youth minister there even called to congratulate him on his learners...so, we just miss him. The older girls are here longer , and Liz goes back to school next Monday. She is having a completely normal Holiday, playing until exhaustion with friends, and also fussing at us, and the others!!! which we consider a good sign, and they fuss back just like any other kid. This is great progress, and I see her now as really more a kid than in so very many years. She is truly forgetting, and no longer considers herself sick. We keep appts to a minumum and after school when possible. And, she is growing and looks filled in, rather than so thin.

So, we are good. Jay will work 1/2 a day, and then come home to nap I think before late Church. He is good, and also his good friend Jay Butler is well too, and did ok with his first Christmas without his mom and seperated from his family....he bought a house near us, and really is going to be fine. I think he and Debbie emotionally settled this long ago, and they can both now possibly move on to a more fun time. I do need to call her, and will this week. There remains much sadness around, and so many BT deaths over the holidays, as well as some older people that were special to our families. Our family has been so fortunate and I can feel God moving around, hopefully leading us to the next step, possibly of more helping. Becca is very involved in a St Jude fundraiser at school, and Julia begins her nutrition classes. Vic, and I am so proud of him, continues to call his friends mom to talk, and did so early Christmas morning too...he will not forget her and for that I am happy. Keep all the kids still battling in your prayer, there are so very many. Neena is struggling, and my friend Kathy is possibly seeing some daylight down in Florida. There are many others, and our online support continues, as we are supported. Also, keep all our Drs in your prayer, may they be healthy! Now, how are all of you????? Jayne and Jim, down in Florida, we miss you both and wish you had been here for our dinner with Dutch and Penny. Sign our book, and thanks to the new readers, we love seeing your stories too. Much love ma

Tuesday, December 23, 2003 7:56 AM CST

All is well here. Julia off to work, and Vic and his friend Pat asleep upstairs. Becca getting going slowly and Liz up a bit early. Lots of friends over the last couple of days, and is so good to see them and hear about Julia and her friends first semester at college....most are doing quite well and still there. (Must brag a bit, Julia got her grades and has a first semester 4.0 at East Carolina!!!) Becca's friends left yesterday morning and they are so nice, and such fun...she has met some very diverse, and good group....they just bubble and also, are proud of doing well....is fun to hear lots of girl talk, and I did enjoy a bit of how it used to be, just listening! Becca has a newly declared double major, Eng and Psych, and I think she spends most of her time writing papers, which she must be good at, as she is doing quite well(except she wont tell me this semester). Vic, is hunting and hanging out! His friend Jamie, in NOVA, had a clear MRI, which was done for headaches....her mom feels the headaches are stress, and I agree as 16 is a hard age, and she did change schools as well. (hopefully Vic isnt giving her the headache!) And, Liz, she is great. Is terribly excited about Christmas, and yes, still believes in Santa, though she has friends that just dont....I think miracles are so real to us, that why wouldnt Santa be real, and as we tell her, in our house, he is real.
Much love to you all, and keep all the families with so much saddness in your prayers please..there is a lot of it this year it seems, and our friends the Moores especially, as they struggle with their son taking his life so recently....he was a soul that could not find his way to live on this earth, and while we do tend to block out the great saddness that is on the earth, some people just cannot, and if you dont have the blocks, I can easily see why it becomes so overwhelming..I know God reached down for him, but now, his family is in such grief.. Also, on a much lesser note, our good friend Jay Butler, who went on the mountain climbing trip and lost his mom while away, has left his wife Debbie, and after much thought and very hard debate, is getting divorced....this is hard for the both of them, so add them to the long long list. Keep in touch, Merry Christmas!!

Sunday, December 21, 2003 8:19 PM CST

Everyone is home!!! Hooray, and finally. Vic came home today with some of Beccas friends that are down here for the night, so we have him, and a crowd of college girls. It is great. We are so blessed, and at this season, we surely have Christmas. To look around us, and remember the past Christmas' we have had, especially recent, is a wonderful thing. We are finishing our third year as a cancer family, and it looks like someone else is writing that when I write it. To look back at where we have been, beginning with the surgery to go into my daughters brain in Baltimore.....from our first meeting here with Dr Bevan, who told us we would be very lucky to find anyone to do any surgery on that area, and she would be left with severe deficits...what a terrible first meeting we had and then he told us we would be lucky to have 5 more years with her....how wrong he was to say that and offer no solution or hope that first meeting...to not say he will help guide us along the way to find the best person to care for her, and to do the best we can to fix her..what a difference in approach we took, as we drove home and refused to be discouraged and accept anything but to begin to search for the right course for Lizzies healing. And, how brave our other children have been this whole time, as we took so long to finally find the right thing....how our course was guided by God, and how we wandered along not seeing the signs right there...The skill of your dr. in childrens cancer is paramount, and though I have been told that the protocols are available to all, and anyone can do the med part, that is so untrue....the skill and knowledge of the Dr and family is totally important. If we had not searched and searched 3 years ago, andd listened to our good neighbor and acted on our own, who knows where we would be today as a family. Also, if 3 years ago, the tumor type had been any other sort, any type that must be removed, as it was not in a location that was possible. Only Germinoma is so radiosensitive that it can be cured. It is the only malignant brain tumor that can be called "easy" with radiation. What a long road. It is hard to remember our lives before this, and what it was like then. We are surely better people now.

Today, at Childrens Church, Lizzie made an angel, and left hers bald, as she told the teachers, "she was bald for a long time, and she knows angels can be bald." God knows, as I read Kathy Charletons journal, and her pain and well deserved anger, we have seen so many bald angels on this trip. The kids in this are overwhelming..in the faith God gives them to go on, and in most of their trust in their caretakers.. at the many Childrens hospitals we have been to, we feel an almost overwhelming sense of power of God there, and not always of healing physically, but of just power of God in the world.. surely Jesus walks with these children the entire way, no matter to them how it turns out, He is so with them in life or in their trip to Heaven. It is truly a very physical feel.

So, we have Christmas. Presents are almost unneeded here(just dont tell my kids that though) and in many homes. The presence of God and the fullness of the Spirit are so with us, we are so blessed in this house, as we go along just day to day.....

Our visit to the geneticist was as I had thought it would be....they brought out the same genetic BT connections I found, and none have anything to do with Lizzie, as I thought. It was basically an exercise in wasting time, as Lizzie's tumor is an error in developement, not a genetic syndrome. However it is good to know, and so we went.

Happy Holidays to you all. Please keep all the families that have such great loss in your continued prayers, the Moores here, that lost their son Jarratt., and of course Neena, and Kathy, and Jarvis' family down in Louisiana, and the list is so endless...these children are so safe now as they are with God, however the pain for their family is too much to bear... There are so many years inbetween loosing a child and finding them again later in Heaven and the time has to pass so slowly. We are forever grateful for our wonderful years and what we have learned, our love and our knowledge that there is little in life that really matters but a short list, and that list has little to do with what you can buy, and all to do with how you live and love. Blessings to you all, and much love ma

Wednesday, December 17, 2003 7:28 AM CST

Morning all! Is raining here like crazy, yuck. Girls are home, upstairs asleep. Liz at school for her last 3 days before break, and Vic coming home soon. He did call late last night and I am waiting to hear, has a friend getting an MRI today for vision blurs, and headaches., the odds are that it is allergy or something simple but keep him in your prayer as he of course is so worried....as Liz began with the vision. However, most headaches are not BT. so, hope it will be ok.

Had Jays office party last night here and the house is clean. Better come look fast. wont last long. Our tree is up and very pretty, after it fell over and I had to glue gun many of the ornaments back together. Still, it looks great.

Am going today to get my hair cut, hooray and finish shopping. Have done so little it is not funny but will hope to finish today.

Would love to hear from some of you, how are you all and are you out there? We keep this up for friends. and also because Google leads to a site that takes bt parents of germinoma kids to our Lizzie site and we hope to help someone down the road. There are few of us, so it would be a rare hit. However, I do like to hear from all of you as well, so keep us posted on your lives.

Running in the rain to Norfolk,. Tomorrow we do the beginning of our genetic testing....not sure what that will show, I expect little honestly, but will see. Think it is the future they are looking for and adding her to the base of research. We are tiring of Drs., and glad the month of visits is nearly over....did a lot this month as it is a slow school month, and also, our deductable is met....by Jan, of course in our case.

All is great. We miss Vic and are ready for him to be home. This has been a terribly hard fall for him, and he really needs some down time and just one month for all to really go well. He is so caring and good. Keep him in your prayer for strength. Much love ma

Friday, December 12, 2003 7:36 AM CST

Good morning! All is well here, and we are settling in to post scan life. Takes a couple of long days to a week to get in the routine, and be able to do more than walk aroung trying to remember why I was going from room to room. Liz is absolutely great. She is doing wonderful, and breezing through things. We are working on make up work and she is good.
Vic is coming home today for the weekend. He is really missing his friend Jamie, and we want him here to recover some. Becca is on her way!! for Christmas break and Julia will be here soon too. We are getting our tree tonight if they arent sold out! and tomorrow I decorate Church and our own home.

Please keep my friend Jane Moore, and her husband Jim, and Mary Katherine in your prayer. Their son Jarratt lost his life this week and it is terrible. He was fragile emotionally, and I think he was one of the souls on earth that life and all its hardness was just too much for. Some spirits just cannot live with the world, and I am so certain that God has taken him to Heaven where all is perfect. However, his parents and sisters are left here to deal with it, and are suffering terribly, so please add much prayer for them.

Hope you are all well. Jays mom, Jayne is feeling a bit down, in Florida, think she just feels a bit depressed and is having trouble with some of her meds acting up....you cancer parents can understand that I am sure! We miss her and please keep her in your Christmas prayer. Am running to cut greens for Church. Much love to all, ma

Wednesday, December 10, 2003 6:55 AM CST

Wow, thanks for all the messages on the sign in page!! Is great to see all keeping in touch. We had a wonderful trip, and yes, the scans were all perfect.!!!

We got there late Thurs night, after being delayed in Atlanta for several hours. Checked in to the Peabody, and it was all ready for Christmas, and so pretty. The rooms are nice, though a bit loud!, and the lobby just gorgeous. We had a late pasta dinner, and then heard Tom and Nan were stil in Charlotte, and made arrangements to get them the next day.

Toured around, picked them up, and off to St Jude, to scan and see all our old friends. While landing Thurs, Liz said she feels like she is going home when we go there. I agree, it is absolutely the most comfortable feeling, knowing we are where the best minds are, and they know just what is going on. Anyway, she had the last scan, and then we ran up to Tom Merchants office to speak to him....he looks great, much more relaxed than last summer. Is doing a lot of hunting, and hanging out with his darling little girls. Jay reminded him we had the scan, so he checked on it just after we left, and called when we got to the room, all clear!!! As Lizzie laughs about, of course I just cry. It is such a relief to know for sure.that all is well. The small details of dealng with the aftermath of a BT are so complicated, and then it gets down to, either all or nothing. That is how the scans are, all or nothing! So, now, we have it all.

The race. Well, what can I say. Jay was the top fundraiser. We cannot thank all of you enough that donated. Every $5. makes such a great difference. It is so good to be able to do anything to help pay back what they have done for us. So, early Sat am we all, Nan and Tom, Bootsie and Peggy, and Jay, Liz and I went to the start line, with thousands of people. They took off, and the rest of us had breakfast....then drove out to see them run by at about the 18 mile line. There we also met up with Seth and Anita who are dong so well.. Wow, what a lot of variety in the race....old, young, and all in good shape!! They all looked fine, and we then drove back to the ball park, and Liz and I waited outside, near the back block so Liz could run in with her dad. He did finish first for the group we were with, and he and a man who was running and helped him keep the pace the last couple of miles can around, and they both took Lizzies hand, and they all ran into the park together...the man with them having run for St Jude a couple of times, but he also wanted to hold onto Liz and finish with Jay ...so the 3 of them ran in and under the finish line..it was really something. Very emotional, and special. Tom came around just a bit later, and Peggy just behind him. Everyone cheers every finisher, and the weather was very perfect. What a good day. Tom and Nan then had to get on the plane and leave as his grandmother died, what a hard day for them. They did get a good tour of St Jude though, and I find it makes such an impression. We want to take everyone through, so you can all understand the feeling of love and hope just to drive in....

Our meeting on Mon with endo went fine, and so did all her tests, and other spine scans. We met at length with Dr. Merchant, and he approved the nutrition supplements, though with caution to not overdo...now thinks I am a nut, but oh well. He also reminded me, that they dont see her as often, and they think she looks really wonderful....good color, gaining body mass, and doing so very well. I do know she is, and he understands..He also feels the memory loss from rad. in her boost location will begin to taper off at about 2 years, and reminded me, though I dont need to be reminded, it is a trade off. We know that. We went to the best, and are in a constant state of Christmas....

So, how are you all?? Our other kids are doing great, a couple of little glitches, like BECCA GETTING THE CAR TOWED, but otherwise all is pretty good. Vic is having such a hard time with the loss of his good friend Jamie, so please continue to keep him in your prayers. It is do difficult. We need him home for Christmas. I think it is an accumulation of the last several years hitting him all at once, and that is hard....much prayer for him please. Julia doing well, and her first semester grades seem strong. ECU is a good fit for her, and for that and Becca at JMU we are glad. Keep letting us know how you all are, and love to Sue and Sonny, as they have a Christmas without Valla. love ma

Friday, December 5, 2003 5:52 PM CST

CLEAR MRI!!!CLEAR MRI!!!CLEAR MRI!!!CLEAR MRI!!!CLEAR MRI!!! Mom just called and everything is fine!!! Now there off to the pasta party to load dad up on some carbs for the Marathon tomorrow!!!!!!!! we are so proud of you dad!!!!!!! Lots to be thanksful for this holiday season.....luv becca

Wednesday, December 3, 2003 9:01 PM CST

We are off! All packed, with 12 pounds of chocolate covered peanuts from the peanut store to hand out....and presents for Anita, and Seth. Packed Jays running shoes, and donations of over $16,000. He did a wonderful job, and Jay and Peggy are the top fundraisers! which is a really big deal. If you need us we are staying at the Peabody, which is a big Christmas treat. Please keep Becca, Julia and Vic in your prayers as they wait for our news here at home, and our parents. It is very difficult to sit and wait in Memphis, and worse here at home......I am certain Dr Merchant will let us know soon how the scans look, but they are scheduled late and we have the pasta party Fri at the hosp too, so will have to find him during all that.... which, believe me, we will. We feel good about it, and the odds are totally in Lizzies favor, so keep only the positive thinking going and nothing negative alllowed!

Hard week here for sure. Am way behind on Christmas, so will do catalog shopping, and am finding lots of fine things on line. The kids will update when we have news. Our cell phones work, and call if you need us. Marge, we are thinking of you so far away, and you made the right decision to come later.
jay phone 757 472 6949
ma phone 757 472 4872
becca 757 478 4870
julia 757 652 1136
vic 757 630 5216

remember only think positive. we are. Much love to all, ma

Tues. Dec. 2, 2003 Monday, December 1, 2003 5:36 AM CST

Just will add a note. Our aunt Valla Stallings, sister of my mom, and Sue and Sonny's mom, died this am in Obici Hospital. Sue was just with her, and Sonny on his way. There are so many Valla stories, and she was a true and wonderful southern character that someone could write about one day. However, This is for certain. She would help anyone. She loved her family, and while she was dificult at times., and very outspoken, there was nothing she would not do to volunteer to help, or for someone that needed her. Our Ella was her most faithful friend and will miss her tremendously and my mom even more, as she spent much time with her sister and loved her much. The last months were not easy for Valla, and this is truly a gift for her to be with her loved ones now, but here, we will miss her. Her spirit is surely free now.

Tomorrow I will get all packed and pets put in their proper places so we can head out to Memphis. Please keep us in your constant prayer for clear scans, this is a very hard week. Liz is great, she never worries. The rest of us do. Think especially of Vic, Julia and Becca as they wait for our call that all is fine. Keep Sonny and Sues family, and my mother in your prayers, and Marge, the sister in Texas that just cannot come, as the trip is long and hard, and short notice...we will have her here in spirit, and know she is here in her constant thoughts. Her brother Bob will be here soon, and that will help mom and the rest. One of the kids will update but probably on Sat am, as we will be in the running things on Fri. and have to find Tom Merchant....we will update as soon as we get the good results back. Keep the positive thoughts our way. Much love ma


Wlhat a restful and good Holiday. It feels so right with all the kids at home, and where they "belong". They are all doing well, and now go back to exams and just a few weeks before Christmas break. Julia and Becca took Liz last night to see Hillary Duff, the Disney singer and Lizzie McQuire star....she had a concert in Norflolk...it was very fun and our Liz truly had a fun night. Julia and her friend Matt spent the night here, rather than go back to school so late last night, and left this am by 6. Becca will go back this am too, as her class is later in the day, and Vic just has to be back before 6 pm. Jay will take him about lunch time to avoid the I-64 traffic that is totally terrible at rush hour. We miss having Vic at home, and are trying to come up with a good local school that has learning skill support, of which there are none, other than his old one, Stonebridge. He went to a very smalll private Christian school, and they loved him, but I will say they were way too Fundamental for me, and after a group of the 7th grade boys got called into the discipline committee, told Satan was involved and grilled for tossing spit balls, we felt Vic needed more space. So, we looked extensively and found Christchurch. The first year was not easy, as it is boarding and we missed him so, and Vic was adjusting. However, they do now appreciate him for the sort of open, honest, gets along with anyone, and caring child he is., and hopefully he will do well there.

We leave on Thurs am for Memphis. Our scan is sometime on Fri. but I dont have a schedule , know her bone density is Fri. am but not sure when either. We will pick up our schedule on Fri. am. Tom and Nan are going and they will go with us Fri. to see st Jude, and then Jay and Tom will also ride the race route. Peggy comes in the later afternoon, and they racers have a pasta party at the Hospital that evening. Sat I dont know the schedule, but Monday we have Endocrine, and see Dr Merchant. Now, of course he will give us the mri result before Monday, if he is there...will let one of the kids know and they will post it. We feel sure it will be fine, and remember he is known to be the best pediatric radiation/ oncologist in the country, and has not had a relapse of Lizzies type of tumor. So,

Keep Sonny and Sue in your prayer, as my aunt Valla is in the hosp and not going to live. She looked very bad when I ran by last Sat, and had pneumonia, and then just got worse and worse. I expect her to leave us pretty soon, and while she has sometimes been difficult through her life, she looked out for many people and loved her family. When she was well, she come to see us when ever she could, even when Ella could barely get her in the back door. She was ok until about a couple months ago, and really there is a time to die, when living is uncomfortable, and you have lived a long time, and there is no chance of getting better..she is quite prepared I feel, and misses her husband Moody. So, I am sure it will be soon, and am sad for her kids.
Remember us this week, as we go on Thurs and find out how things look. Remember Jay and Tom and Peggy as they race, and be proud of Peggy as she is the no. 2 fundraiser for the team!! Let us hear from you, when noone signs in, there is not much point to write....Liz loves the feedback! love ma

Friday, November 28, 2003 7:54 PM CST

Is Friday after Thanksgiving, and was a very good holiday. Our dinner was so good, and we had too much food and very good company. We are leftovers tonight and they were even better. Jay Butler wandered in and ate some too, so we were glad to get rid of more! He had an ok holiday, without his mom for the first time so very hard, of course. We talked by phone to Jayne and Jim, so far away and wish we could spend the holidays with them in some way. Our kids miss the holiday time with them, and Becca is really the only one that remembers many Christmas' in Delaware with them. We used to go , or over Thanksgiving and then go to the city of Philadelphia, which was a big treat. So many traditions they are missing, but we will begin our own! I am getting Jayne to write emails about different things she remembers, and am printing them off so we will have them , often with the item that we used that made us think of them. Becca, Liz and I went to the beach today to help mom and dad close it up for winter, and Becca is a sweet heart, and hard worker. The beach at Kitty Hawk is really a mess, with most of the ocean front cottages either fallen in totallly or just over and waiting for the high tide. It is amazing to see them just toppled over and off the pilings...I am sure the owners wish a high tide would come a push them down all the way rather than just part so they are condemned but still have to be cleaned up. Julia wrote a paper and Jay and Vic hunted, was a pleasant day. Tonight the guys are off hunting with Joe in Carolina, and tomorrow we will roast oysters. Is cold and rainy so hope that stops.

Will run, Keep our Aunt Valla in your prayers, she is in the nursing home with pneumonia, and pretty sick. Has been a hard fall for her, and she is not young. Mom is pretty worried, and we will run over tomorrow. Also, all the people in need, and there are many. Much love ma

Tuesday, November 25, 2003 6:58 AM CST

All is great here. Julia home yesterday about dinner time, and she looks great and is doing well at school. She is a Nutrition major now, and with all the need we have had of one, we are pleased...she is taking food classes next semester, so that will be fun. I keep telling her about my organic finds, until they are all sick of me!!! Then about 7, Becca rolled in too, a day early.....she loves to do that. So, they are all here and I slept so well last night with everyone where they belong. Liz is thrilled to not be alone upstairs,....is a big house for her up there by herself.!!

We are cooking this week and finding new things to make....I bought the turkey and have big plans.! Will be fun. Jay has a bushel of oysters coming Fri. for the cookout on Sat night, and we are thinking that will be fun too.....the weather is finally cool and for that we are thankful.

We go to Memphis next Thurs....the tests are late Friday and then we have the race pasta party, and Sat is the race!! and then an after race party at a bar on Beale St......we will go and will be fun....mid afternoon on Beale st is very safe and quiet. A big surprise for Lizzie, we are staying at the Peabody!!! Hotel, the race had free rooms for all the racers on Fri and Sat night, and we asked to be put there, as it would be fun, and we do try to make these trips fun in any way we can.....we are excited about it, and want to surprise her by just pulling up there on Thurs night when we arrive...Then we can walk to all the race things, and though the trolley is fun and no big deal to catch, this is just nice for a December trip. So, dont tell Liz about it!! I think Tom and Nan are going too, and our friends from Nebraska, Peggy and Bootsie will be there. Peggy is Stevens mom, who was at the Ronald McDonald house with us. She walked daily and then decided to run this marathon as well, and being a mom of 4, and also busy with lots of other stuff, I am so proud of her and impressed. It is a really big deal. Hopefully Bootsie will hang out wth us while the race is going on, and then we will meet the runners in the baseball stadium to see them come in. Now, we may not hear about scans until Saturday, as our scans are late on Fri. We were originally for early Fri. am, but Liz does not get sedated, so they move her all around and fit her in as needed....she is an easy scan. Phyllis our scheduler there knows Liz well, so we get put in any old place....now I think it is about 3, but not sure, it was 7am, then 5pm, and now the computer says 3, but?????who knows . So, dont get nervous when you dont hear on Fri, it means nothing. And to be honest, if the scans are bad, we will know while she is in the machine I think, as they would call in the Dr and take extra.....

Need to run. Vic off hunting, girls asleep and Liz at school. Much love to all this wonderful Thanksgiving season. Please remember our Kathy Charleton, who is one year from loosing Robert, and it is very hard, and Neena, who is still so new.....remember all of us who are a bad test away from terrible news, and a good test away from continued good health. Also, know your family is a treasure, each day....none of us get any guarantee, so spend all the time you can together, and make it a positive time....dont let the negative in, and continue to thank God daily for all you have. Let us know what your holiday plans are. and much love ma

Sunday, November 23, 2003 8:19 PM CST

We are home from our Charlottesville appt and all seems to have gone well. We did wait to meet with Dr Farace and the very very preliminary report is" all seems good, some a bit worse, many better and some the same". So, the neuropsych will be evaluated and they will give a full report in a week or so, but before we go to Memphis. We went to see Becca in Harrisonburg and it was a good and fun visit....her apt is very very well done, looks so cute and for college girls they do a wonderful job decorating and keeping clean. She looks great, and we did lots of fun things.....then ran to pick up Vic Sat afternoon from his friend Jamies' home, and the 3 of us home late Sat afternoon. Jay in Louisiana and now on his way home from a hunting business trip, and Julia hopefully coming home tomorrow afternoon for Thanksgiving break. All is well. Liz has several tests to make up, and unlike last year, when we returned from Memphis to have 4 tests in one day, and of course do terribly on all, we had a message from her Mrs. B that she and Mrs Riddick has worked it all out....Liz will do the make up in the office where it is quiet, with her tutor Mrs B, and all is fine and worked out. What a marvelous difference a teacher that understands what matters is....the love of learning is the important thing this year, rather than the force the work even if you are ....you all get it, I will stop there. I cant say enough about Mrs. Riddick and her caring. I feel that in spite of it all, thngs will go well at school. What a great feeling that is this year, and Liz loves LOVES to go. It is a blessing and a gift.

So, keep our girls in your prayer as they travel home this week. Keep Jay as he flies home tonight. Keep my dad in as well as we do Thanksgiving differently this year, with our families dividing up for the turkey dinner, and my parents coming here for the first time...actually I am excited as I can use the china Jays mom gave us, and our silver, etc....have not had it out in many years, since before Liz got sick. Will be a good change. Guess I did use it for Christmas...so not for any other meal...will do this this year and see how the next one goes......will work out Christmas later, but am sure mom will have to have the Christmas eve thing even if it is just a simple soup.....her house is just still a mess...moving fast, but a mess. Vic out down the street and glad to be home, a bit at loose ends it seems but he will adjust to being home in a day or so.

Keep in touch and have a blessed and good holiday. Much love ma

Monday, November 17, 2003 8:57 AM CST

All is fine here. Had a great weekend, and Jay ran his final looong Saturday, 20 miles of his training. From now on the trainning tapers off, so he will be able to do the final marathon in Dec. in Memphis. He has about $13, 000 now for St Jude, thanks to all the donations you have sent. Has been a true committment of love on his part, for Lizzie and our other cfhildren, to show them you must stand for something...and act on it. We are proud of him, and thankful for all the wonderful support...many many people have written and sent checks, and Jay is slowly finding time to thank each one. He has been also busy with work, since the hurricane, of course in his business, they have been swamped with keeping all straight. But, the letters are coming and all of course know how important the donations are to the children that need St Jude, and please be sure you let all know that is where they should go first!

Please remember Kathy Charleton today, as it marks one year since Robert died. Her journal is still kept and her life has been through major major change this past year...many hard and difficult times. There are so many in this that dont make it, and as I go further along and meet and "meet" new families, I realize that in reality it will just never end. We will forever be a family of a brain tumor child. Lizzie is well, and growing and we are glad. However, our family is forever so different . My other children, have seen far too many deaths and far too many terribly sick children. They, in return have a true appreciation for life, and hopefully will continue with their Faith in God, and grow in the knowledge of Gods love. It takes so much to come to the point that you can give control to God, because you then know, Gods plan is not always on this earth. As we move into these weeks before scans, I feel good about Liz's health. Yet, I also know that it can all change in the blink of a scan, and it can happen without any warning at all. It is terrilby frightening to think of, and so I try not to, however it is what we live with all the time. We have her neuropsych testing this week, and they will begin the process of mapping her brain, and the changes that radiation have made...it is inevitable that she have changes. We expect to see learning problems, and she has a struggle with memory now. Reading is difficult because of her vision. Dr. Farace, in Charlottesville, is well known for her work with brain tumrs. Again, we have one of the best. They will help us plot out a plan, and I just hope the difficulties are not so great her present school will not deal with her. They are wonderful now. She could not have a better teacher this year, and one that automatically does what Liz needs. We will see. Many brain tumor children are left very disabled, and Liz has not been. On my brain tumor list, there are only 2 other germ cell tumors, with the same location and treatment. They are doing well. They are succussful in school, and in life. So, we will see. I do know this, every day for Liz is good. She loves school. Every day she still replies her day was great. We approach it knowing we can overcome or go around. Please keep Kathy in your prayers, as she has lost her job as well,,,and this is a very hard time. Also, Neena, as she goes day by day. There are so many others.

Julia was home for the night. She and Matt rode up and took Liz to the movie, Elf., and apparently it was very good. Keep Matts family in prayers please, as they deal with some difficult times themselves. Julia is good and loves ECU. Becca has written and is well, and we hope to see her Friday, but not sure. Vic went to see his girl friend Jamie this weekend, for a birthday party for her. He is doing well, and comes home this weekend for Thanksgiving Break. Mom and dad got home from their trip to Oregon and had a good time, if a bit tiring. The house is slow but sure, more slow than sure, it seems. The mess is going to be very irritating. We need to talk to Jayne and Jim, have trouble reaching them it seems as we seem to call during dinner and they are out. We do think of them often. No more news. Please let us know how you are, and what news you may have. Much love ma

Thursday, November 13, 2003 8:19 AM CST

so much going on this week, and yet nothing much at all! Do you have weeks like that>?? All is good here, and was just reading a really good article in the Breeze paper from James Madison University, that Becca wrote! She is doing that for fun and doing a really good job of it. Has had a lot put in. We are proud of her. Julia called and is doing well too especially with her new roommate and liking having someone she gets along with in her room. The old one was hating ECU and missing some boy, leaving every weekend. so this is better. My girls have really blossomed this year. As has our Vic, who is having a good week. His voice on the phone is much better and the hard week has passed. Of course they will miss their friend but fortunately they will begin to be back to normalcy at school as they grieve. Years ago we bought this house, thinking it would just hold us. We have our bedroom down, and 4 and a little den up, with many baths that are old....well, now upstairs is just Lizzie, and 3 other empty bedrooms that we clean and get pretty and then they are empty. The time of their being small is so very fast and then they are gone off doing other things. We have so short a time to give them the base they need to be happy and faithful and successful. Our wonderful children are growing up, and they are so far turning out to be adventuresome and good people. We just miss them.

Our good friend Seth was helping Anita's family trim a tree in Memphis and fell, breaking his elbow and wrist, on seperate arms. Keep them in your prayers as he heals and Anita nurses. They have been our good and wonderful friends, I cannot think how hard it would have been having Liz in Memphis without them there. It made it a pleasant time rather than a hard time. Think of them for us please.

We go in just a few short weeks to do our 6 month tests. I am fully confident that you will have an entry here that all is clear. I have been really researching germinomas, and they truly do not relapse after radiation. Our problem was using an unproven clinical trial, even one from Sloan Kettering, that had bad results. Our saving was finding Dr Merchant....finally. His research was out there, we were scared here by the reports of what rads could do to a young brain. Well, there are some deficits and we will go test and find out in Charlottesville what they are. However, being alive is the even bigger non deficit.......so now we know. Go to the best you can find when you need a Dr. Do not trust the groups that do not do what you need all the time. Be sure you are with someone that has done lots of what they are dong on you.....our drs here in Norfolk do little cranial radiation, as Norfolk does not have the machines.....so, they scared us. Learn everything you can and take charge yourself. Liz is doing great. She is growing and looks really good. Her appetite is slowly getting better daily as we move further out and into "real" life. She is loving school as it remains her true gift to be able to go. So, keep her in your prayer as we go back to Memphis is Dec. and rescan. Keep all these children that are living with cancer in your prayers and if you can spare some prayer for us, that is good. Neena appreciates your notes, and please dont forget her. Much love ma

Sunday, November 9, 2003 12:00 AM CST

Is a beautiful Sunday afternoon here, and we have been to Church, and are home for a relaxing afternoon....that is, as we go. Jay off at the office cleaning out the shed where the hurricane knocked it cockeyed....looked like the crooked house...but he does not run today, so he is glad. The marathon is taking a lot of his time, training, and he will be glad to have it behind him so he can run just for fun,and put our kitchen countertops in...but he has raised over $10,000. so he is very pleased to be able to send all your checks to St Jude in the team name. We go in just a few weeks, so if you will, keep us in your prayers. Liz has grown an ENTIRE INCH,,,,,2.5 cm, since August....that is the most since 2001. Her growth curve has finally changed since Dr SAtin Smith raised the GH in August, so we are so pleased..She is 124.5 cm now and I dont know the inches, 2 1/2 times I think, just about 4 feet. So, we have growth, and we just need totally clear scans. As we get closer I will remind you all of the dates.

Mom and dad are off to the Elderhostel in Oregon, to study food and wine....dad finished radiation Friday and off they flew Sat am early. Good for them, and for him finishing so quickly.

We did see Vic at parents day yesterday, and I do have to tell how proud of him we all are. He is at a wonderful small boarding school, and we met with all his teachers. We have always known our Vic was very special, and has a great ability to be a great friend, and was raised with much teaching of loyalty, and values. His old school taught and emphasized character more than anything, and reinforced what we taught at home... He is at a place where that is recognized and his teachers all value his good qualities. This week, he was a pall bearer, and also gave a talk at the school memorial to his friend. He and some friends wrote a song, and the lyrics are very good. He also, and this really touched me, has calledJamies mom just to talk to her....this must be a comfort to her, as I have heard that it is often that people find it hard to call, and quit calling as they dont know what to say. So, I am proud of him, and was surprised to hear he had been doing this. We miss him so, and it is soo good to go and see him. His teachers all spoke about his maturity this year, and we are blessed and fortunate.

So, things are good. The girls are doing fine, and I need to talk to them today to see how their weekend went...They are seemingly well adjusted to college, and Julia has really done well her freshman year. Becca has good roommates, and this was one of her roomies 21st birthday, so I am sure they had a party. I started to call really early this am, as I am sure they have a crowd staying with them in Harrisonburg, but will wait. Things are going very smoothly and well for us all right now, and for that we know that God has kept us in his plan, helping all cope and adjust to what has come along. Life has not been perfect, and in many instances at all fair, but we have been given a great gift of Faith to carry us along, and to help us know that Gods power surrounds us and is great. We owe a tremendous debt to the world for so much turning out so well....and while many in our family have challenges to overcome, we are finding ways to do it with grace and without whining...and we make our way around or over what comes up, and know that things are good. Love to you all, ma

Tuesday, November 4, 2003 5:34 AM CST

just want to check in this morning. We took Vic back to school Sun Evening, and he was met by the school staff. The school then took a group to the visitation, and they spent time talking to Jamies parents..it was very hard but comforting to the family. The school is doing what seems to be a good job, and yesterday was the funeral. Vic and one other boy,and a couple of his coaches were pall bearers. We really have a special person in our son, Vic. He is very caring and is able to really give himself to others in friendship. The boys spent the afternoon then with each other and school staff talking and then, Vics special girl friend, Jamie from No. Va, came all the way down to see him with her mom....they had been to Richmond to buy a puppy and "ran" by CCS....only 1 hour out of the way. Yesterday was her 16 birthday, and what a nice person she is too. Vic sent flowers to her at her school, but I think she was on her way to see him and did not even get them....they will be there tomorrow! I am sure. Christchurch School is a very small community and they had this young man Jamie there for 2 1/2 years, so it will be very sad. Living together the kids get very close. Vic is very sad, and that is hard to see. I am proud of him, for being able to do hard things. Thanks for keeping him in your prayers. Becca and Julia got back to school safely, and it is always too good to see them. They are all growing so close, and I think our make a wish trip was a big step in our family healing and being able to look ahead, and the older kids having fun again together.

Jay has raised over $9,000!!! We are so thrilled to donate all that to St Jude, and they have a list of incentive gifts too, so we are also donating a tv to radiation/onc., which I am happy about. We go early Dec. and spend several days, scanning, doing lots of endocrine things, and seeing Dr Merchant. We are also hopefully going to spend time with our friends from Nebraska Peggy and Bootsie, as Peggy is running as well in the marathon. She was with us in Memphis, as her son Steven was also succussfully treated for another type of Brain tumor...she walked and ran daily, and is a very disciplined and determined person. Our friends Seth and Anita, who you all know or have heard of, are also in our plans, as they have bought a new cabin and Seth is hoping the girls can also go out with them when they go hunting on Sun....Seth and Jay go wtih Dr Merchant, so that may be fun.

Liz is good. She is learning slowly to study, and we are protecting her while she figures out how her "new" brain patterns will work. I see progress daily in her patience and learning style...she will be ok, but it is not easy. She had a long and hard treatment, and getting back in the study swing in difficult, both the memory and just the work....we keep at it daily, and she is learning how . She looks great, and we are blessed. My dad finishes rad. this week and they leave for the trip to the Pacific Northwest to study wine and gourmet food at the Elderhostel. They love the trips, as you learn, visit places you study, and meet nice people. Dad is feeling good, a bit more tired, but really amazing he is not more tired. Still gardening daily. He finishes Fri. and they leave on Sat, and they need to fly off and get away from the construction dust. Love to all, ma

Sunday, November 2, 2003 1:43 PM CST

Well, folks, has been one of those mixed weekends. The birthday went great, many nice and wanted gifts and many friends over as well. We took 5 11 year olds to the movie Brother Bear, and it is a good Indian spirit movie. Becca and Julia got home Sat and are doing well, and Julia getting ready to go back to ECU now. Becca can go back tomorrow. Was very good to see Liz and her friends having a good time and laughing.

We need some prayer however, for Vic, as one of his very good and close friends from ChristChurch School was killed late Friday night in a terrible car accident. Jamie was a fellow football player, and a great friend. Needless to say, since the early Sat am call, things have been very upset here and rather than stay until Monday, Jay has taken Vic back to school early so they can all be together for the visitation and the funeral tomorrow. It sounds like the football team will be pallbearers, so Vic and his friends will have a very difficult day on Monday, Jamie was a fellow boarding student, and they all become very close. His good friend driving put on brakes to avoid a deer, and the accident happened then. There was no alcahol or speed involved, just a dark and narrow country road.. Please keep all the boys in your prayer, and Jamie's family, Please also keep Vic, as he will have to deal with this death of a good friend. It is hard to see him hurt so, and also be gone, but he belongs with his friends at school.

So, a celebration weekend and one full of saddness. A real mix, I guess as usual. Keep in touch, and much love ma

Thursday, October 30, 2003 9:58 PM CST

will just add fast note. Halloween is going well, we have not bought a pumpkin yet but will hopefully tomorrow if there are any left. More fun though, is the Birthday Party this Sat, with several girl friends, and a movie, dinner, and a picture project to take home. Virginia's mom called and she is even staying late, which will be much fun. All the gifts are bought, and will be wrapped. Sunday we will have a fast ccokout after Church and then the girls will have to go back to school..Vic can stay until Mon which is great. We need to have them all home again, in their beds. Becca has not even seen her room since I made the curtains, etc. to make it pretty. Years ago,Mama Jayne gave us a bolt of citrus green fabric, and it is a perfect color with the walls Becca picked out, so the room is grown up and so nice. Julia is next. Liz gets some new things for her room too for her birthday, pre-teen sort of things, as she has told me, she is going to be a pre-teen now and is excited. There is not a child that is having more fun growing up. Every day is good still, and she remains thoughtful and very kind, so she did not get too terribly spoiled in all this.!!!(yeah right)
Will run, and get some rest. Keep Neena in your prayers, she is better I would say, however, better is relative when your child has died......she will find some ground to move forward on, of that I am certain. Jay is doing well with his marathon money, we are proud of him. We are making reservations next week for the trip back and I will be glad to get there! So many details medically to keep straight, and once these scans, which will be clear, are done, we will move on to the genetic things and the neuropsych test,, then schedule the Wilmer eye appts for Spring break. And, yes, I do keep a long list each day of what to do.
Love to you all, and hold Becca and Julia close this weekend as they travel to the big Halloween "do", and then home, and then back to their schools again. Much faith, ma

Sunday, October 26, 2003 7:48 PM CST

Note the new picture, and I did it!! Must admit to this being the first one since the girls left we have changed, and glad I could figure it out. This is Liz in Florida and she looks good! All is well here, we just finished our bi-weekly Bible Study, and it is good....we have met for years, and our new preacher comes now, which we like, as new people are so good to have in a group that has met a long time.... Jay home from the beach, and our cottage is fine, and the dune now clear, but the beach is very narrow, and they did replace the dune fence to get the dune rebuilt. Most of the ocean road in Kitty Hawk is gone, the houses there falling, so it is still a mess. Amazing what the ocean can do...glad I was not there to see it all. We are baby sitting the Fulghams dog, Katie. Last time we kept her she slept with Lizzie and when Julia got home late and told Liz good night, Katie nearly bit her hand off she was so scared! by being awakened. So, tonight she is in her crate. They are at a pary in Richmond and will be home tomorrow....Katie is good. We have Nadia tomorrow, our favorite psych,...she is wonderful with Liz and is helping us get back to normal. Hopefully this will prevent the delayed stress syndrome many kids are seeing when they reach adulthood, with late dealing with all that has gone on. The more protecting we do now, the bettter and the better to get on with normalcy....for Liz, it is slow but going well. She is so happy. I hope it is going well for the other kids and wish they would write and tell us. Becca is finally having what I consider a good and happy year, she took the brunt being gone that really bad time. Vic, we just hate having gone as he is young but is doing well and is mature, and we see him as often as we can...Julia is more of a mystery, we talk often and I think she is having a wonderful time at school...she is proving to be a good friend to someone now that needs her, and one of our favorite families is having a very difficult time, is confidential yet, but Julia has been a help when needed....as I knew she would be. We are proud of our kids, they just seem so far..however they will all be home this coming up weekend!!!!
No real news tonight. Good to hear from Uncle Bob, as he and his new bride travel, and also visit his old home of Trinidad....Kathy Charleton has signed in, and is doing pretty well.. Is one year since Robert died, seems so short..I remember leaving Memphis so vividly with them still there, and how fast things change. I am sure the time has crawled for her, but she has been able to find much love in life and her family, and the world. Robert is proud of her from Heaven, and his spirit is strong in the world still.....his heaven is not far from us all. Keep Neena close as they struggle to get one more day. We rescan in 1 month, so keep that in your prayers please, as we move to 1 1/2 years post rads.....so much going on and we really need Liz to begin to gain weight. She is now trying ensure plus, like her wonderful friend Pat, so will see. She did not tolerate that before, her brother and sisters can tell you. Pat is doing well, taking tamoxifen, and looks super, though a bit thin. She has been so good for Liz, and the closeness they had before Pat got sick was beautiful, and the shared bond of cancer is a bittersweet one for sure....still it is there. Our good friend Sybil, at school, who has stood up for Liz over and over, and keeps food in her desk for her, we often call Liz Sybil Jr, and one day Mrs Mullins, the headmaster, got Liz out of class to meet Ms. Sybils dog, that was recent......anyway, Sybil's mom is near to her next checkup for ovarian cancer, and we need to pray for her. also, Lizzies wonderful Mrs. Blousey, her 2time second grade teacher, who found her vision and sent us to the eye dr, and had Liz for the 2 years she was the sickest, and also came to Memphis to visit and hung out with us in a bar on Beale St. when Liz was loosing her hair by the handfulll....her mom is finishing up rads and chemo for lung cancer....is there some sort of terrible pattern here????So many so close are terribly touched by this. No wonder Liz needs Nadia, I think I do too! Keep in touch and let us hear from you all. We are going to try to take my mom and my aunt Valla this week to look at a childhood vacation place, Burwells Bay, that was totally washed out in the storm...I understand there are no structures left on the water, and few on land....am afraid it may upset Valla too much so will try to pick a good day. Then the Birthday this weekend!! Lots of love ma

Friday, October 24, 2003 8:30 PM CDT

Wow, we need a new picture.!!! Miss Liz now has a new haircut, and also has her hair streaked, and it looks far more like it used to look than ever!! Before chemo, she was a blonde little thing, and after chemo it came back sort of blonde. After radiation, it came back brown, like Julias is now, which is beautiful, but the streaks put just a bit of the old color back into it......so Thanks to Mama Jayne.!!

Lots going on. School going well here, and Liz is learning how to study and also, best of all, is beginning to navigate the social issues in school with out needing me. We see Dr Nadia often and she is wonderful, and Liz is moving along. When I am ready to push, Nadia reminds me of times, like at Taylors viewing, that Liz has had that other kids have not had, and asks, what is fair about that and why would you want to push her before she is ready?? So, we continue to protect her. Much of our plan is her teachers, and she just does it and then, tells me. What a wonderful thing all this experience is,in a teacher. We are going for genetic testing in early Dec, and for Neuropsych testing in late Novermber, and of course the biggie, the St Jude trip in very early Dec. I have been reading lots lately, and reviewing all the Germinoma info I can find, by Dr Jeff Allen, who we consulted with in NYC< and whoever else I can find. I remain confident that Dr. Merchant is the best we could ever find. Every detail he said to me I have checked, even the "if her Bhcg is over 50 we re-evaluate",,,,,and Dr Allen says over 50 is the magic no. I trust him totally, and read and read, and trust him even more. I only wish we had been led to him and St Jude early on. However, we remain convinced there was a plan, and our getting there when we did was a part of it. We continue to see our KD group, and are spread out medically. We are going to Univ. of Va for neuropsych tests in Dec, which will tell us where we stand neuro. wise, for school and late effects. We see Genetics, for whatever, and hope to learn lots about that growing field. Lots going on.
Vic is great, and was just home. We will also get him next weekend for Halloween and the birthday. His got pretty good grades but for some spanish trouble, but language is not a life necessary thing, so we work with that. He is ready for his learners, and we will try to get to the dmv to get it....he was at school when he first could get it...will see. He looks great, and is a treasure. We have a great advisor this year, likes him and we like her.
Becca and Julia remain good. They are doing well, or say they are. We will be glad to have them home next weekend too. Julia is changing her major to nutrition, which is a great thing.....Good ness knows we need it big time. Becca is making beautiful gradesa and also, and importantly getting very involved in some school things. She is writing for the newspaper, and likes it. They are doing well, and most of all, we miss all 3..
Dad is 2 weeks to finishing rads, and doing well. The house is very slow, lots of doing before it can be fixed. The back of it is coming off, about 15 feet from the attic to under the foundation. They are saving the bricks. Is a real mess but they are dealing well with it......The guys are going to the beach this weekend to clean up the pier that fell and landed on the dunes, about 10 feet in the air it seems. They are big timbers and will be hauled to the street. A mess all over, and we still have construction crews daily in our neighborhood. Great trees fell, and the stumps are 15 feet in the air on the curb.

We are good. Life is blessed. Jay is training and getting checks in daily now, and is over $3,000. His goal is about $23,000. Wow. Lots of miles and hard work and he is getting lots of support as well from friends and family. Nothing is the same, ever. We remain forever different, and the normal days I spend with some time online reading about my brain tumor friends all over and how they are doing....is a new life for sure. Still wondering what path will be put in front. Neena is day to day, and will forever miss her Taylor . Part of her is just gone, and frankly I am proud of her, for doing so well. I cannot imagine the pain and yet I can, but wont!!! Keep her in your prayers. Also, Liz's teacher from last year, Wendy, and her son, Nicholas. He stepped on a nail, and is now on crutches, with a cast, and also, a temporary line!! and ivs 3X a day........seeing that line brought back so much . He has a major bone infection, and is seeing the same infection control guys we did.....will never forget being told they have no guarantees the meds would work and keep Liz alive. They must be used to hysterics by now,as I surely was that day. Anyway, Wendy is dealing with lots, and keep her in your prayers, as she surely is not used to that, and to anything out of the norm....pray for her and her family as Nicholas heals. She frankly had little sympathy last year for Lizzie, so maybe this will help some for her to understand why I may have been so agressive. I often feel torn between understanding and realizing it was a bad year for me as well. Lots to deal with and you understand, forgive, and hope you are forgiven and move on.

Love to you all, and keep in touch. ma

Sunday, October 12, 2003 7:26 PM CDT

hello all! No real news, took Vic back today after Church, and he is well. Miss him though. Julia here and will be a couple of days for fall break, and we love having her. Jay saw Becca and she is great, and sent about 100 pics. of the Florida trip, and they are all good....will get some on here if Julia will this week.

We are fine. Liz had Virginia over for Fri. and they really had a wonderful time. They played and laughed so much, it was great. They got along well. The game went alright too, a couple of girl glitches, but Liz will learn to get along and read signs . The radiation leaves kids often more impulsive and less able to interpret social sigs so we will talk about what things mean and how to handle them as we go along. We are stll in the adjust and protect phase, and I am working closely with her Dr Nadia to tell how to handle many things. But, she is happy and learning to fit in, and really, it is often just hard to be a girl!

Jay is training hard, ran 17 miles in the mountains on Sat, and more this week. We are sending out lettes this week to begin the fund raising for the marathon, but if you would like, send a check to us, made out to St Jude Childrens Research Hosp, and marked marathon. We turn it all in together, and one thing he could get is a dvd-tv, which I would love as the rad. dept at St Jude could use another one in the treatment rooms! for the kids and he would let them just take it to them. Every $10. counts! I am the record keeper, since I am not a runner!

Please keep in touch. It is heartening as we go along to read how all of you are doing as well...the day to day, and to share your lives. The sharing is the most important thing this site does, and we do love that part of it all. It is becoming easier every day to get used to this life now, without the monthly and weekly clinic, and frequent scans. My friend in Canada took her son, also a Germ Cell BT for his 3 year scan, which was perfect, so knowing his was clear is great news. We daily hope Lizzie is able to forget, and she is moving on, but it is hard, as really, at what point do you relax? Then, you also deal with the side effects of it all, which will be many, and just dont get to the point of the unfairness of it all. ..to not just have been sick, but also the deficits, the hormone replacement, and the future issues of children, or rather not, and everything she will be asked to go through and then everyone just expects a smile the whole time too. Our Faith is total, and constant, and we are so certain of her wellness, however also fully know that Heaven is such a reality now..my fear is only if we ever had to be without her. Reading Neenas journal, and Kathy Charltons, it is so hard. So, we grow and move on, and still life here is totally changed. When someone fusses at me because I didnt call early enough about a garden club arrangement, it is really hard to take that sort of nonsense seriously. So, maybe we are better for it all! Keep in touch, and love to all, ma

Thursday, October 9, 2003 10:12 PM CDT

We are home, and the trip was so good. Jayne and Jim look great, have super friends, and the weather of course was perfect I will fill in the details later, have been running this week all over. Had clinic today and all is ok, Liz not gaining weight! the skinny little thing. Is getting very tiresome so we go off to see Nadia, who helps us both I think. She is happy with Liz's progress, and also feels she needs much more time to be adjusted and fitting in, and back to a real normal....so on we go. Hopes we will protect her a bit longer until she is right back where she should be, so of course, we will! We are also going to see the Geneticist, to have a gene study done, and see if there is any coorelation between gentetics and Lizzies cancer, or her birthmark, or whatever....will take lots of time and family info. so all be prepared to spill the beans , we need info !!!! There are some syndromes that can show up, I think they wont but will check it all out. Also asked Dr Merchant about it all too, to see the St Jude stand on it all. Will let you know our progress!
will fill you all in on the trip later in the weekend, and hope to get a pic up too. Vic will be home this Sat and Julia too, Jay visiting Becca tomorrow as he is up on business. Lots of travel and that is a good thing. The party was beautiful and I hope Becca gets some pics up for you all. Much love ma

Wednesday, October 1, 2003 8:21 PM CDT

well we are off !! The bird is with my parents, and Bob will be happy and fine we are sure. He is very people friendly and loves to be out and with someone, so they will entertain him . The dogs and cat are with Kay Duke, and they love her so are good. Julia is at school so keep her in your prayers, and Vic at school too, and he also has a game this Sat as well. Becca wil meet us there. I do have my phone, 757-478-4872 so if there is an emergency, please call!!

all is well here. Liz is good, and we are going to pick up the study pace now that she is adjusted so well socially. She must now also learn to do school work Yuck who wants to! She is having a great year. Jay still running lots and the St Jude letters will go out soon, for his race in Dec. so if anyone feels like sending what ever, they come to us, for St Jude Childrens Research Hosp....we are shooting for a big goal and Jay is training hard.

Keep all in your prayers. It is so nice to hear from evryone,and keep in touch with your family as well. Many thanks, love ma

Tuesday, September 30, 2003 7:04 PM CDT

We are packing again, and this time not for Memphis! Off on Thurs to Florida, for an Anniversary party. I am torn, as Vic and Julia are not going, it just did not work out for them. It will be very lonely without them there too, as I miss them so very much. However, seeing Becca, and Jayne and Jim, as well as Dutch and Penny will be much fun, and has been a long time since we were together. As a matter of fact, Liz and I have not been to Jayne and Jims home in Fla since they moved to Bentley Village, a retirement community! so that is a long time. Is good to go and meet their friends and have some fun!!

Is also about 3 months since last in Memphis, and Steven goes this week for his 3 month checkup. Keep him, and his dad Lyle in your prayer.. Most brain tumor kids go for 3 month visits for longer it seems, but we are on 6 month now....Is sort of nerve racking to NOT go, oddly enough, is very comforting to see Dr Merchant and his thumbs up, all is perfect answer. However, we do surely feel all is well, and daily Liz falls more into the normal routine of life in 4th grade, doing the normal things they do. Her teacher Mrs. Riddick could not be a better fit for us. She is just what we needed, and each day Liz answers "Perfect" to the ??? How was your day. This is a great thing to see, and then, we are hit with something like Taylors death, just after our visit to her birthday party, where Taylor asked that Liz be given a Mormon Blessing for continued Health...then, the next week we attended her visitation, and had to prepare Liz for the open casket...She handled it so well, and was able to know that the body there, with her angel bear, jewelry, and white new dress, was not really the essence of Taylor, but was her shell, while Taylor was surely with God, as she must have had a great welcoming party there. I think Liz does understand these things, having faced many times of great illness and great faith as well. It is difficult to know exactly how but she does. That is a wonderful gift , but also a great responsibility for someone her age. The whole thing is a learning process, and she, as well as our entire family, cannot go back to the days of before. That in itself is also difficult, but a new and in many odd ways better way of life. Nothing is taken for granted. Every day is a total gift from God, to be living. Even the hurricane was such a show of Gods power, with the great swirling clouds, and wind..how much God commands. So, why does He not command these children to all be healed? when we know absolutely that is possible.? There is much we simply cannot understand, however, the saddness of it all is there so big along with the wonder of this world. It is sad that one cell can make the difference in life or death, however, all need to remember that one careless minute can also mean the same thing. We are charged with doing Gods will and it is a great and wonderful but terribly challenging charge, as many days it is difficult to even get going and hold it all together with thinking about what could be, and then, being joyful for what is today. In Bible Study, our new minister talked about the relationship with God, and how it is so ongoing. We have learned so much about Gods leading, yet I know hardly anything. The first lesson seems to be live day to day, and you cannot have control of much. The lack of control is very hard, and the day to day is the only way, as then each day is a real holiday, with so much to glory in. These are the times I miss Becca, Vic and Julia so... What a ramble.! Much love to all, and keep Kathy Charleton in your prayers, as this is near the year anniversary of her Roberts death, and she is facing many life changes. Follow her link and write a note. Neena still needs much, and I am calling Edmarc to educate me in how to even begin to help her, I am totally inadequate. Also keep my father and mom in your prayer, as dad continures his radiation, and deals with his first real illness for himself, and the real destruction of their home, or at least a big part of their home....I will put a pic. here when I can figure it out. Is much for them to deal with all at once, and they have been faithful in the total support of our family and their prayer for Lizzie as well. The list is endless. Much love ma

Monday, September 29, 2003 8:33 AM CDT

Hello all. We have Power! actually, we did well with the generator but it is so good to have light on demand in every room and also, to wash dishes in hot water. The power co. from W. Va fixed our lines, they are here from all over....so, we are back to normal, Liz in school, and all the mess beginning to be picked up from the streets. For those out of town, Mom and dad are getting straight, and still have no phone, but hopefully today the lines are getting repaired.

Not much going on here. We go to Florida this week for the Anniversary party, and that is really going to be a fun trip. Will be nice to get away for a bit to an area that is not torn up. We have not been to see Jayne and Jim in truly years and it is really time!! We are planning on having loads of fun. Jays brother Dutch and his wife Penny are coming too, and they may still be out of power in Richmond, so they will be happy for some hot water, or any water since they are on a well!! Becca meeting us there, and Julia and Vic not going, as school with them is too busy....Vic has 2 games, and Julia not sure about missing that organic chem. class lab and all....so, we will miss them. Has been a long couple of weeks but will admit Liz and I had fun while she was home....sort of like old times, but she was off with her friends the whole time and no longer likes to sit and cuddle, so is grown up, and very fast. Was fun to see her being social, and going off to play and not looking back. Has been the whole point of all this, right?

Keep in touch, and let us know how you all are. Love ma

Friday, September 26, 2003 7:51 PM CDT

hello all, will be very brief as we are still without power and slow on the generator. damage was extensive and lots of really big trees on houses, and roads blocked, etc. schools will open on Mon and we have a generator and some hot water so we are lucky for this area. it has been a major mess and we hope to have power in a few days, . moms house is really bad but is under plastic and the tree is gone. they lost their bedroom and attic and some garage, and the foundation is sunken about 3 inches from the biggest tree you can imagine, but they are fine. the beach is ok, the dune held, and the sand in totally covered with the remains of the pier, tons of lumber. here at home the cleanup has made our streets passable now, and we are really fine. all asleep by 9, which suits jay fine. this area of Va is a real mess so the news is very true,. and this was a bad storm. we had no damage on our house, , and all the kids are welll at their schools, and we see Vic tomorrow. will update when the power comes on, as this is very iffy with the generator blinking on , so hope you are all well,and doing ok. Know Bob nimmo is, and sonny and Ann too, and saw Nancy nimmo and they are fine. mom and dad are ok, not great but not hurt and have a contractor so they will be ok. many trees took out houses here, and roads, and the tunnel to Norfolk flooded and is still being pumped out! what a mess. will keep in touch, hopefully soon, thanks for all the thoughts. talk to neena often and they are not great, keep in your prayers. love to all, ma

Thursday, September 25, 2003 8:08 PM CDT

Hey y'all, its Becca again. Mom and all still don't have electricity so I'm updating, though I really don't have much interesting to say.They say it could be November when they finally get electricity back in our neighborhood!!! Just want to say hi to everyone and to please continue to pray for Neena and Taylor's family, and Pappy! Hope everyone is doing well! much love

Monday, September 22, 2003 5:26 PM CDT

Hey y'all its Becca again. Mom asked me to update so I'm gonna try, though I really don't even know what is going on at home since I was the only one in the family who wasn't there this weekend. But, talking to mom and Lizzie, and even Dad today for like the 2nd time since i have been at school, everything is fine at home! They still don't have electricity, but they do have a generator. Mammy and Pappy have electricity and the tree has been removed from their house, so thats a plus. Lizzie didn't have school today and I don't know about the rest of the week. Everything here is ok. There really wasn't any hurricane damage but a few trees that are down and some fast running streams and rivers. However, a guy I knew here did decide to go canoeing during the hurricane and drowned, so if we could pray for Chris's family that would be nice. That's about it. Taylor's family is still in my thoughts and prayers and everyone elses' too I am sure! Also remember to keep Pappy in your prayers as he fights his cancer.luv you guys!

Monday, September 22, 2003 5:20 PM CDT

Hey y'all its Becca again. Mom asked me to update so I'm gonna try, though I really don't even know what is going on at home since I was the only one in the family who wasn't there this weekend. But, talking to mom and Lizzie, and even Dad today for like the 2nd time since i have been at school, everything is fine at home! They still don't have electricity, but they do have a generator. Mammy and Pappy have electricity and the tree has been removed from their house, so thats a plus. Lizzie didn't have school today and I don't know about the rest of the week. Everything here is ok. There really wasn't any hurricane damage but a few trees that are down and some fast running streams and rivers. However, a guy I knew here did decide to go canoeing during the hurricane and drowned, so if we could pray for Chris's family that would be nice. That's about it. Taylor's family is still in my thoughts and prayers and everyone elses' too I am sure! luv you guys!

Friday, September 19, 2003 11:17 AM CDT

Hey Y'all! it's Becca. Mom asked me to update because they all have no power! Everyone is ok there. Bob Nimo- she wants you to know that all are ok, and to call if you get a chance and let everyone know that your ok. There are trees down everywhere in the neighborhood and they probably won't have electricity for days. So today they are cleaning up, cooking on the grill, and taking cold showers, but as long as everyone is safe its all right. Mammy and Pappy had a HUGE tree fall on their house and take out their bedroom. They are ok, but the tree is now decorated with their wall paper, curtains and bedroom belongings. The cottage at the beach is fine, untouched! Phone lines are down everywhere so they, mammy and pappy, don't have phones either.
I know norfolk and the beach and areas around there got torn up. Here is a webstie showing some of the damage there:
http://www.wavy.com/Global/story.asp?S=1448226
Hope everyone else is ok too! So pray for the recovery of everyones homes and belongings etc. and thank God everyone is safe. I also want to let the Hancock family know that I think about you and pray for you daily. luv always, becca

Wednesday, September 17, 2003 7:33 PM CDT

Well, Vic is home with a friend, and out of school until Mon. unless they are out of power longer. Julia is home too, as ECU closed until Sun as well, and they were making the dorms students all sleep in the basements! So, we have them home and tomorrow should be interesting here. We are already getting wind and those band clouds that are so interesting to see, going around. We do miss Becca though, and wish she had come on home too!!!

The funeral today went well and Neena did a great job, took that Zanax and got right through it and gave a beautiful talk. She is a very strong woman for those who originally thought she was not. She called and I could very honestly tell her the whole thing was perfect, and they did well. After the very difficult death, and a really very bad last week, it was good to have the peace and the love of the funeral, frankly, and see that Taylor is in Heaven and at rest and being a child with God for sure. There would be no other way to bear it, if you had no Faith in a better place for her now. So, we are prepared for the storm, and it is good to have all the kids at home, but Becca who we just miss!!! Much love to all,and safety for all in the way of this wind, and we will be in touch. love ma

Wednesday, September 17, 2003 8:34 AM CDT

Hello all. Things are fine here, the weather is beautiful, you would never know we are scheduled to get blows away in a day or so. Sunny and cool, so is easy to get out and get prepared. Putting all the plants up and the furniture, and boats in and covered. Lots to do, and we can pick Vic up this afternoon too, as they are cancelling his classes Thurs and Fri. so the area can evacuate around that is low....This is now a small hurricane, so not nearly as dangerous as the cat. 5 it used to be, thank Goodness.. Not sure yet about Julia coming home, and Becca will get tons of rain, but stay put.

Have Taylors funeral today and will be very sad and hard. They are surrounded by family, and I worry about Neena, and will keep in close touch with her as she struggles now.

No news, am running out to put things up.. We usually loose power for any thing so dont worry if we are out for a while, wont run the computer on the generator. will keep in touch later! Good luck to all in the coastal region, like Bob Nimmo, and all the Nimmos down in Carolina, and they may also have Julia with them! and her cousin Lydia as well. Much love, ma

Sunday, September 14, 2003 7:55 PM CDT

We lost little Taylor today, about 11 am. The night was hard and she was very weak, and I have no details yet for anything.

We are all watching this rather major hurricane, and hoping it turns out to sea. It could be a big deal if it hits Va Beach, or the Outer Banks, so we are keeping a eye on it. With all the rain, it could knock some trees down! for sure.

No other news. Kids are good, and weekend was nice. Keep in touch, love ma

Saturday, September 13, 2003 5:21 PM CDT

Updated in Lizzies book rather than Taylor, sorry and ignore it in the history. All well here, had good time at church, good band and many neighbors came over to see what was going on!! Jay had done a lot of calling to plan it so we are happy with it. We served 50 each of hotdogs and hamburgers, so someone was there! and we are glad. We are trying to get our name out. Lizzie had friends over to the picnic and also to the house to play, so that was really fun to hear her voicd laughing with friends. She loves her new room so thank you Becca! Talked to Vic, they lost the game but he kicked and did well, got a field goal and extra point. Julia fine, and a bit worried about this hurricane ...it is a big one, and possibly coming this way. Mom called our cousin Scott Kiser who is the national hurricane man on all the major channels, with the Nat. weather service, and he is cncerned and told them to close up the cottage and come home, so they did. A category 5 is major, and the Outer Banks is due, but hope this just goes off shore. Julia will be evacuated from ECU, as they are inland and low, and her road home is very low and over many NC rivers, so she would have to head out fast and early. She has a good 4 wheel but I dont want her to need it! Becca is good too, and excited with the rest of us about going to Fla later . She is so cute and fun, I want her to have the perfect year. Guilt still over her freshman year I guess! We got some gifts this week, for Fla. and for Penny Dorschel's birthday, which was fun. Keep in touch, have a busy week, and remember Taylor in your prayers. She is not doing well and they think the time is poss. hours, as her breathing is slowing. Is very hard. will write later, love to all!

Saturday, September 13, 2003 5:07 PM CDT

Hey all. Will update for Neena again. things are very bad, and they are still at Kings Daughters. Taylor had a very bad night, and she is finally showing some calming and possible pain control, but it has been hard. Neena and Terry are very tired and have not slept. Dr Werner is there pretty constantly and they have her with a one on one nurse, which is a help. Neena would like to take her home, but it ssems she is a bit fragile right now to do that. So, they are there, and will see how the night goes. Her breathing is slowing and for now she is resting more calmly. Dr Werner has stopped taking the vital signs, as they can see how she is by being there, and it is very distrubing to Taylor to bother her with that. Much prayer is needed for Gods will, and of course we just wish for a miracle now to save this child. It is a very hard, and they are holding up really well through all this, and they have the strength of God with them. The whole family really needs and appreciates the continual prayer from around the world, so sign the book please, as Neena surely will real this all later.. Know that they are strong and that is coming ffrom all the prayer for strength, as they are not eating much and never sleeping. I will either see them in the morning or call and update. Much love ma

Friday, September 12, 2003 9:12 PM CDT

hello all! No real news. Dad doing well with his radiation and the Drs got his marking done and they are started, and in time for them to make the trip out west by one day. So, reservations are made!! They are at the beach tonight closing up incase this hurricane comes as they cant go during the week and Jay and I cant as we have that Church band tomorrow! We hate to wish bad luck on Charleston, but that big storm needs to head south!

Lizzie is great. School is wonderful and a gift. the other kids are well and we miss them. I am still updating for Taylor, so am tired tonight of this, but always appreciate your prayer and love to us as it keeps the day going. Loved reading Bob Nimmo and Naomi's entry and we hope to see them longer next time...she is charming! Also, to hear from our Peggy out in the mid west, and how Steven is doing! lots of love to all, ma

Wednesday, September 10, 2003 8:43 PM CDT

no news! Met with Lizzies teacher today and she is wonderful. Mrs. Riddick has a great perspective on what is important and what Lizzie needs to know, and what can be let go until next time. Liz is keeping up, and doing well, and hopefully when her low vision books come she will be more comfortable in class. We are pleased, and could not have a better beginning of the year. of course, there will in any child's year be glitches, but we will work those out. Things here are good. We miss the other kids, and wish for a bit more summer.. Jay is training hard!. Please log in, otherwise, this is pointless! Keep Taylor close as she is struggling and also her parents as they cannot imagine what life would be like without her. Taylor is weak and her skin is beginning to thin and be a problem, so please keep them in your thoughts. Neena calls and there is little anyone can do. She is faithful and has been the most determined fighter for her child imaginable. Let us know how you all are. Much love ma

Tuesday, September 9, 2003 9:21 PM CDT

Good week so far! Lizzie is loving school, and doing well. She is going right in, fitting right in, and really likes her teacher and her class. She is fussing about her clothes, what to wear, and which shoes to put on!! Normal, kids stuff. Hooray. I think it is a relief to her to be moving on. We did see Nadia, and they are working on the food stuff. The approach, eat your heart out, is to eat whether you are hungry or not....and consider it medicine. Also, I have to be tougher and do more making her eat before the fun stuff, which tonight finally worked with the scandi shake after a dinner of not ....we are making good progress and it must be tough for her to have this, and to be dealing with school, image, having to figure out how she learns and how to remember things when your brain is not totally the same, and the whole pre-teen thing. However, we also talked about seperation, and how it may be more difficult after being so close to us, and dependent on us., and how we will always love her no matter(big surprise)...it is not an easy thing, this dealing with life after
But, much easier than during! Went with my dad to the rad/onc today, and liked her very much. We all had our list of ??? and she answered them very well, and mine also, and they are going to do 7 weeks of radiation here, and will do the ct for marking tomorrow and begin soon. He has a low stage prostate cancer, and they expect good results, and the hurry is a trip to the Northwest on an Elderhostel about food and wine, which they can just make if the begin right away. So, will see. They are also arranging Mon and Fri. around the beach times, and for the hokies out there, she is one too, and is arranging one day of rad. so he can make a football game....I feel reassurred and have had to adjust to the thought of doing something locally, when my first thought is to get to Hopkins! This will be fine, and they do this well from all I had found out, and this is "routine". So, in this case, staying close, and getting good treatment is an option and a good one.
Our other kids are great. Vic did so well in his game Sat, and we are still thinking of how proud we were. Julia is adjusting so well, and when she calls she is meeting and doing things with new people there at school. Becca is as usual doing great, and we have not seen her for a bit, so we miss her. Her roommates are really good girls and they get along well, and are at the stage they work out their problems, so we just hope to get up to the mountains soon to see her. Bob Nimmo was here, and we saw him too briefly and met his fiancee, who is charming and very pretty, so he is doing well. Hopefully next time we can see him for longer, but Valla did love spending her time with him too. We are going to Fla soon, and Jay and I are getting more and more busy here,. The St Jude letters are going out soon, as he did the 1/2 marathon in a good time, and it was terribly hot, so Memphis will be more fun. The marathon is planned as well as a hopeful day of hunting while we are there....he is training very hard for it all. Jay B. his running partner is back in the swing of things from his mountain climb..
Please let us know you are out there! We miss hearing from you all. I talk to Neena often and will update for Taylor tomorrow, they are sort of the same, though I cannot understand how. It is very difficult for them, and their Faith is very strong, sometimes though it is hard to reconcile the 2 when it is your child. keep in touch love ma

Thursday, September 4, 2003 9:27 PM CDT

hello all! am not ignoring you but have been busy and that is good. school is going great, and things there are proving to be loads of fun. Lizzie is doing well and we meet with the teacher next week. There are bound to be deficits we find, but her goal was to begin the year like the others and she has. She has fit in totally. We are pleased with that. Tomorrow she is going home with a friend after school to play, thank you God! and she is excited. We have ordered large print texts, as she is having difficulty with eye strain and the books now that she is reading more. We will deal with the school things as they come up and be glad there are not more of them....we are blessed with the tiny number of deficits there are, after all the brain tampering we have done.
I am updating for our friend Taylor so mine here will be short. Keep her in your prayers. We miss our other children very much, and will see Julia this week at a football game....will be the only one I attend as Vics games begin as well. Becca will go with us to Florida in early October, to the anniversary party! The house is very lonely and quiet, and we miss them all. Lizzie sees Nadia on Monday and we will try to work through some eating issues... she remains very thin and eats little. We could use some help with this if there is any really good advice. My dad is meeting with the rad/onc. for prostate cancer next week, as this is a fairly recent developement. I will go with them to take notes and have a long list of what I want to know as well....keep them in your prayers, and give my mother patience, as he is not always "easy". (sorry!!!)
much love to all, and thanks for checking in. ma

Thursday, August 28, 2003 7:40 PM CDT

good day!! No news, busy with "stuff" all going along, and finishing school projects. Jay running Sunday, Vic home Mon. we think after he visits a friend for a couple of days and has a football game. He is the kicker, ...we are proud.

Lizzie is good and still loves school. Julia and Becca sound good and like me are getting busy.

I am updating for Neena, so keep them in your prayers. They are having a struggle, and Neena knows she was given the gift of more time back in Nov. of last year, but will not give up...she is prepared for the worst, and will continue to do all she can, as how can you not if it is your child that cannot live with her disease. So, keep that family close please, and let us know how you all are! Uncle Bob is coming next week and we will be glad to see him, and his new friend. Hope all is well, love ma

Wednesday, August 27, 2003 9:16 PM CDT

Just got a great call from our St Jude friend, Peggy, Steven's mom!! Wow, she sounds so good and all out in Nebraska is going well. They are one of the strongest families, and we were in the Ronald Mc. house together. Is so good to talk to her and just hear her voice again, and Lyle in the background! too. I miss the togetherness many days.

All is ok here at our house. I would ask you to keep Neena and her family and Taylor in your mind, as they did not get a good report in clinic. To treat the fungal infection, they must do surgery to remove it from the locations it is in, which right now is the lung. Aspergillis wont go away with the meds, but the meds can hopefully keep it from spreading too much more. However, the bone marrow still shows about 95% leukemia cells, which of course is not good. They will not do surgery, and Neena is aware that things are very grim right now. Taylor is home, getting all sorts of meds, and Neena is very discouraged. Of course, the etermal question is why, when you consistently pray for a miracle, and for healing, does it not come for your child. There is just not a good explanation, and it is heartbreaking. Neena and Terry are very tired, and I will call her tomorrow. There is nothing to say. Every parent of a child with any cancer thinks about this time, but I cannot imagine it in reality. And, as Neena said, neither can she. So, pray for something, at least strength as they all need that, but what she really needs has just not come.

Our family is good. Lizzie still bouncing into school on day 3, and I can see our challenge with this year will be the work, so we are reading together and frankly, I am focusing on getting her work done and having some fun and little frustration while doing it. I am not doing it for her, but am helping so she can see it as less of a great challenge right now. We will surely find out as the year goes by what she can do and what the treatment has made difficult. Then, we will deal with it. Her weight is not going up fast, but we are working on goals this weekend for that.

The ones away are fine too, and I miss them. Tomorrow I will write more, and keep them in your thoughts please and their safety. Love ma

Tuesday, August 26, 2003 8:18 PM CDT

Spent about 4 hours with Ella, cleaning and rearranging Julias room, and it was so dusty I am embarrassd for her to have been in it!!! She will think it is a beautiful hotel when she comes home, 5 star at least and we did not toss much out, just put it away in a organized way. Does anyone out there need and Qtips or earrings??? We have enough for 100 people, as well as hair elastics, perfume, and pictures of kids doing things I should have never seen!!! No, seriously, she left her room in ok shape, and we did it because we love and miss her. She now has a sitting area, and a plant, and lamps that look pretty and we went up after dinner when Liz brushed her teeth and sat and talked. Lizzie had a bit of a sad spell at dinner, she just misses them all. It is hard with all the other kids being gone, but we do know this is right. So, .....to Becca, Julia and Vic, we love you and miss you terribly!!! Tried to get Vic home for the weekend on Thurs afternoon, but his coach wants him in the game on Sat ot kick and to play varsity and he will stay....will get him either on Sat evening or on Sun afternoon.

Julia and Becca doing fine. Julia really likes it so far, and begins class tomorrow. She is worried most about organic Chem, so keep her in your thought. Becca is trying to find her way with what she really loves, and she has lots of things as she is a fun and wide open young lady, who likes about all she does. I hope she will look into some sort of overseas semester, as she would like to learn to speak Spanish, and that is a good way. Will see, but keep her in your thoughts too as she begins her JR year, and this has been so fast. Her moving in to her room years ago without me still is on my mind, so hope I can give it up soon.

And, Lizzie. She loves school. She loves her teacher. She is making a new friend every day, and has had a wonderful 2 days. She is not loving to read, so keep that in your prayers, as we find a way to deal with her vision and find a way to instill the love of reading, or at least tolerance. Will call Hopkins soon to get to the low vision clinic,and see what gadgets they offer. We raised her GH dose tonight to full dose, so LOOK out, she may get so tall you wont know her! Thank you Dr. Satin-Smith, and dr Merchant for backing me up when we needed it done. Even from India, he answers when we need him. Surely God sent us to St Jude, and speaking of St Jude, we are sending out letters soon for $$$ for the Marathon, so if you are interested in donating, drop us a note. The money will go to the radiaition research dept, and run through the Alsac group, so is fully deductable. Jay is running literally miles daily to prepare, ....and I am doing yoga to calm down!!!

Love to you all, Please keep in touch, and all the kids all over that need so much in your prayers.

Also, just talked to Neena, and Taylor has a lung fungal infection. Now, they will do a bone marrow and if the leukemia is going away, they will treat this. If not, the fungus' are very troublesome. Keep them close please. ma.

Sunday, August 24, 2003 8:43 PM CDT

Well, we all got settled! Julia had done a great packing job, and we used our garden cart, so she really only had a couple of loads to get into the dorm. Her room is a bit small, but like all dorm rooms. She does have a good closet and a good big window, so lots off light. We got there before her roommate so got her things undone and sort of out of the way. The whole thing I loved getting to see her dorm, rooms, etc, but did make me realize all over again how hard it was for Becca and how strong she was to not let me know, It was a treat to help get Julia straight,and she is happy there so far. Of course, they dont start classes til Wed, so will see. I thing right now they are getting to know the school and the parties, however Julia is a sensible girl and I am confident she is going to do well.

Becca is good, and is liking it this year. I hope she will look into taking a semester and going somewhere she can learn Spanish, as she has wanted to do that for some time. She is ready for a change, and I can feel that...so will encourage her to look at some program abroad for a bit. Will see. Vic is good, had a good game and callls us in the am, to check in. He loves football and his school, and we are missing him/

The house is very quiet, and it is odd. Lizzie is great, and had company over, and today she was acolyte again. She does a beautiful job, and it is a good example of Church cooperation, as her vision is not great, and she has little depth perception. Getting the candle lit and put out is a challange, as she will tell you, from her height and with her vision....we light them before she goes in,and when she puts them out, the snuffer often misses the candle several times before she gets it on the candle. So, someone in the choir, or the minister, reaches over and helps her if she needs it. And, when she is finished, she comes running out to me, and loved doing it. She nearly did not do the whole thing, as we practiced for a long time, and she could not consistently light or extinguish the candles, but, as I told her, she could not give up. She must learn a way, so she did, and with the help of the others, it goes well, and the whole Church loves her and feels she is a miralce anyway, so we are happy with her. Still, it upsets me, to see her not be able to do such a simple thing. However, she gets it done and that of course is what matters. And, she is terribly cheerful in her heart, so we are blessed with that. We have found our way, with all the brain tumor stuff, and we have found a much richer life for it all. However, remember I can say that, as my child is healthy right now. While many of us find much love, and a whole new world of meaning, many dont live. So, we are wiser and also in a different category from many, and can still smile through it all.
Remember Taylor and I will call Neena tomorrow to see how things are. Also Kathy in Florida, as her precious children go through another year learning how to live with such loss. Dr Merchant has been in India, giving talks, so keep him in your prayers, and Jay, as he runs for St Jude.
We are good. How are you all/?? Love to all, ma

Friday, August 22, 2003 7:14 PM CDT

Well the first day of Becca leaving, and Liz had her orientation! It went great, and she has a good class. This will be a super year, and when the teacher said there were more girls, she just laughed out loud. I am sure you all agree that her laughter is so special and wonderful to hear.
Becca is back at school and happy to be there. She left her new room looking so good and I will make her new window treatments. It is a fresh beginning for us up there, with the new bedrooms for Liz and Becca. We needed to get the rooms done, and forget about the year spent with the machines and illness in one of the rooms. Doing them over has been the best, getting a new color and new space, and new beginning.
Our friend from so far, Kathy ,signed our book. She read about Taylor, and has been there. I read her book daily but often cannot sign, her life is very hard with Robert gone. We forget when we can the pain of these treatments that don't work. However,. when we pray, please don't ask just for the one or 2 we mention. There are great numbers of kids there, and they all need so much..it is not possible to ask for one and not all, as none of them deserve it more than the other. When we think of Lizzie getting this tumor, one that is curable, it seems the miracle that Vic prayed for so diligently, but then, why? The number of brain tumors that read "curable" is terribly small, and really only with ours is it written that word. The rest have the odds......which dont mean diddly with just one child. And, the blood cancers are supposed to have progressed, but, still, you get the Roberts, and the Taylors, who relapse again and again.
On a good note, I emailed Dr Merchant about some GH thing and also mentioned a possible hunting trip this winter after the marathon......he wrote back in one hour, from India!!! Nothing like a hunting trip to get an answer!
Please check in. It is good to hear from Kathy, who I hold so close, and also our uncle Bob Nimmo, who is now a landlubber, and near Julia in NCarolina. He is good about keeping in touch, and we are glad. We go to Florida in just a short time, and that will be fun seeing JaYNE and Jim, and Jays family for their 60th Anniversary. That will be a treat for sure.! Keep in touch, and keep all the kids close. If you want to donate to Jays run in Dec. for St Jude, drop a note and we will send you a card. He is shooting for $1,000 per mile,and he will make it, I am sure!
Keep Julia in mind tomorrow as we go take her to ECU/ She will do great, just need to get her settled and do our crying!!! Love to all, ma

Thursday, August 21, 2003 8:12 PM CDT

Hello all! had base line tests today, and for the ekg, Lizzie had to be kept awake to make it work...she can nap anywhere! did great and also on the eeg, am sure it is all fine, will hear next week but not worried.

Ran into Neena in clinic, and they are home. The Drs at MD Anderson could not get insurance approval, and they had to come home....they called and called, and the co. would not cooperate. The Dr. then gave Neena the co. pres. name and told her to go for it, and go after him big time for being so slow. They flew home commercial, so today Taylor has a slight fever, so the lines are being cultured, etc. and ...what is next??? Noone knows at this point, as Duke thought she had about 2 weeks left, and it has been 5. Taylor is tired, and was very homesick, so Neena really thought that they should just come home rather than wait there and fight it out. She was admitted in Houston also, and the infections are a scary thing now with no immune system. So, please just keep the prayers, for her healing and also her families strength through all this, as at best even the drug in Houston is not a cure, but time.

Becca leaves tomorrow, and while it is the right and proper thing, it is very sad. I am better not writing lots about it tonight, as then Julia leaves Sat, and Lizzie has school tomorrow to meet her class. Vic is at CCS, and as of tonight, is the Varsity kicker!! Can they get hurt? Tonight, he sounded great, settled in and liking it. Was the first time he was really good, and we are glad.

So, tomorrow am Liz has school, then Becca leaves. Sat, we take Julia to ECU, and home Sun to just the 3 of us. Now, we are terribly happy that our kids are doing so well, and going off is the right thing at the right time. We know that. But, we love them so and we do miss them. We have had some wonderful and quality family time, but also missed so much too. I feel we just cant get enough of being together and all laughing. Our best gift ever is that they are all now healthy and doing well. For that, we thank God, and move on to the next phase. Still, it is not always easy,
Please keep Taylor strong in your prayers, as they really dont know what the next step is, she has lots of leukemia but also GVH, which is her system fighting it as well. There is no road map for this, and frankly, the Norfolk group was at a loss long before Duke and MD Anderson, and now they are all at a loss for what to do next.....so, it is still up to us to support them.

Love to you all, and during this busy travel time, be careful. We had the best time with Seth and Anita, and miss them. It was like they were home here, and either here or Memphis, we love to be with them. They are very special to us all. Even, Anita, with Seths TERRIBLE jokes!
Love, ma

Thursday, August 14, 2003 12:44 AM CDT

Some good news, Taylor is nearly certain to be accepted into the clinical trial in Texas, check out her web site, and leave a note, as Neena is very uplifted by the prayers and notes. I remember one of Neenas friends in the first summer we met them telling me they were so worried about Neena getting through this with Taylor, and now I watch her calling heads of MD Anderson trials and making her arrangements to get to anywhere she needs to take Taylor, and no, she is not shy, and dont get in her way! Parents of sick kids can teach a lot about getting things done!

Also, in reading Lizzies notes, see that our wonderful friend from last summer, Peggy, is signed up for the St Jude marathon now as well!! I am so excited, and Jay will be too, and it is a real big deal! We link to Steven here, and he begins school soon, and his sister Michelle, or Bootsie in Lizzie terms....they have one married son, last Christmas, and another in school out in California. So, I guess Nebraska is seeing Peggy going by doing her miles now too! We have our followup planned around the run, going in on Thurs evening and scanning Fri. and Monday...then coming home on Tues...can you believe we dont go back until December!

All is good. Seth and Anita come today, and the magic room is ready tor them. Sadly, Vic goes to school Sat, and we are not thrilled with that, but we did (I did) break down and get him a phone, so we can talk to him more often. So, fun weekend planned! Love to all of you, ma

Monday, August 11, 2003 8:21 PM CDT

Happy Monday! Not much news, all is good. Still struggle a bit to get Lizzie to actually eat, but went today with Vic and Pappy to Chubbys and she ate a ton!! Pappy also gave Vic his going off to school $$ so, he has paid his part of his new surf board! Now, we need some sun so he can use it some more!

All good. Had Bible school and the kids had a ball. Becca and Vic went on their own and helped and it was great. We do like our new preacher, is very oriented to commumity action and helping with a mission to serve the poor, which we surely have around our church. Will see how it all works out. Julia home from the beach and she and Chrissy had a good time. No other news. A busy week, with Seth and Anita coming and Vic leaving Sat. A very sad time, with him going for us, as we miss him so much when he is gone. Many of my friends have their second child leaving for college, and are very depressed, and talk about it a lot.....I am not, as Vic loves it, and it is time for Julia to go to college, and we have planned and wanted this of course. Still, it is hard and we will have to adjust to their being gone and missing them. You may see us on the road a lot visiting!!

Let us hear from you please, so we know you are out there! Sue, I know you are there, what are you and John and Alice up to?? Miss you all, and Jayne, we are thinking about you here in Va, and will call before Vic leaves on Sat. am. Love to all, ma

We have had RAIN, but was a great weekend. The best was my cousins' daughters wedding, "down the river", in her yard, overlooking the Nansemond River, and their pier.

The weather broke and the sun came out, and a breeze was blowing and it could not have been more perfect. Kelley looked perfect, and her dress was beautiful, very classy and formal. They had every tiny detail done, and the bridesmaids, and mothers of bride and grrom were beautiful. The groom I dont know, have met, and he is a marine, as is Kelley. He is qute handsome, and his South Carolina family very attractive, and very unlike our wide open crowd.....he brought his own minister, who gave us old Va. folk a sermon on being submissive to our hubbies, and made us all wonder how we all managed to be married without washing feet and being feminine all day long...however, I am sure he meant well. I do hate my young unmarried girls to hear things like that, but they got a beer and survived.. he was a bit much, and did not speak of Kelly nearly as much as we would all have liked.. and when he talked of her being protected by her husband , we wanted to remind him that she is a Marine too.....

We saw many cousins, and loved it. Sue and John were there and look wonderful, very relaxed and good. It is always good to see them and keep up with their news, and have Sue remind me she reads this page....may send her the code and let her update some! Joan and Sonny as usual had the house open and cooked a pig, and let us all use the pool deck to relax, and Sonny even behaved, at least until we left. Usually he sets something major on fire, or does something wild....however, he is having his knee replaced soon and we could tell he hurt, even though he would not want anyone to know. Sonny I have mentioned here, as he is the one everyone calls when they are in a legal fix and need a good lawyer....got Jay out of a ticket on our way to Baltimore for surgery...They have 2 really gorgeous girls about the age of Becca and Julia and they have fun together. Nancy and Craig were there, and their 2, Lydia who was in the wedding and looked great, and Craig who was helping, and is a real mess..cute and fun. We have gotten to know them a bit better lately at the beach, as they are right down the beach from us, and Craig has helped Vic with his surfing. Then, Nancy and Joe, and their 3, and Mindy, and lots of other in the older crowd. Bob Nimmo and Mary Jo were there, and Banks, and I rarely knew who I was looking at when I saw him, he is very grown and handsome. Martha was there, and good to see her as well.. Who have I left out? I will remember and add if I forget, that is not unusual !!! It is a very fun, and lively group, and with all of Anns sisters, and extended, it was a perfect day. May have been a bit subdued for our crowd, but it was so well done by Ann, and perfectly organized.

We are all good. Liz was acolyte today, and did fine. She cannot light the candle, as she is, in her own words, "way down here", and also with her lack of any depth perception, could not get the candle light wick to hit the candle....had a bit of trouble getting it out, and we will work with the depth as she gets older....as I told her, we will find a way to do all these things, and never walk away and say " I cant" . The depth lack made it difficult to light the candle from far away, ....we will work something out. We just lit them before and she walked in with the choir, and then put them out. May be why it is hard to ride her bike, and play some sports.will see what Hopkins says this fall.

Julia off to the beach overnight, and Becca and Vic helping with Bible school. Seth and Anita come this week, and we are excited. However, it also means this Sat Vic leaves, and that makes me very sad. It is really hard having him gone for school. He likes it, but we really like him home.
Keep Taylor in your prayers, they leave tomorrow for Houston, and will see if they offer any help. They may stay, and they may get sent home...is very unsure and unproven. Pray the Drs. at MD Anderson have something new and wonderful. Also, keep Sonny and his Knee surgery in your prayers, and the 2 of them as both their girls go off to College and leave Joan home with an empty nest and a husband with knee surgery.

Please sign in, so we know what you are all up to. Lyle, we miss you and your family, and hope to see you all soon. We think of Steven often, especially now as school begins and he goes back having overcome some challanges from the bt....also thiniking of Matt in Maine, as he goes back to college, and his mom who must be struggling with letting him go after this last year of treatment. Keep Jay and the marathon in your prayers, and we are taking St Jude donations for his miles!!! Love to all, ma

Thursday, August 7, 2003 8:34 PM CDT

Just got a call from Neena,and they are accepted at MD Anderson, leaving to be eval'd next Tues........They are trying a new drug, actually a couple they are being looked at for, that have just been approved for possible pediatric use. Neena got the team Dr. leader's name and called him to talk him into taking Taylor, so today they did....they will do a total eval and then see what they can do for her, and now Neena needs transport there by Tues, and cannot fly commercial due to the infection risk. So, add all this to your prayers please, it is a big deal, as KD has nothing to offer, and Duke either at this point, and MD Anderson is the lead Leukemia hosp in the country........She needs transport in either a private plane or some sort of RV, and I promise she will get it...

We are good. Several days of followup tests before school, to get our baselines set. Then, everyone goes back and we will have just Lizzie here! What a major adjustment for us all. We had Jay Butler over for Dinner and he is doing well, getting back into the work swing and being home, and to his mom being gone. His pictures from the trip are amazing.

Will update as I hear from Neena, she will have her computer, and I will keep in touch. Pray for getting there, and a breakthrough med. that will work. or buy more time. Love to all, ma

Wednesday, August 6, 2003 8:05 PM CDT

all is good, no news. Clinic went well, Dr. Satin-Smith wants to up the GH dose, as does Dr Merchant. Trying to get endo at St Jude to agree, but also getting Marta SS to call and do it now, as they both agree Liz needs a bigger dose! We are seeing growth, but want to see more. Will keep updated,

Getting ready for Seth and Anita to come next week, and Bible School starts Sunday. We have been cleaning the magic room so they will have a clean place to stay, and cant wait for them. All kids are good, and school packing is going well. Just a couple of weeks left, and we are washing clothes !

Keep in touch, Love to all, ma

Friday, August 1, 2003 9:19 PM CDT

Today was a good Day! Liz had tutoring, and then all the girls went shopping for the hopeful last of school things.....and of course they all found something! Gap has great adjustable waist clothes that fit Liz, and Becca found some things, and so did Julia, so we had fun. Vic and Jay getting stuff done in Richmond, got Dutchies back porch straight, then could begin the work. They are having fun, but at 8 Vic called and Jay and Dutch were asleep, so they are really no fun for a 15 year old.....a pair of fuddy duds! Hopefully Vic took a book, as he was not worn out enough to go to sleep at such an early time!

We are loving the routine of getting ready for school. Julia is packing daily, and Becca reminds me so often that for her freshman year, she packed with her friend Sara Blythe, after coming to the hosp and our being told Liz was too sick for both parents to possibly leave, and I could not go with her. After Nancy Webb sat with me in our school meeting yesterday, I began to remember her also sitting with me in the PICU the day Becca went to school, ....She and Helen split the day, and stayed while Liz was recovering from her big surgery, etc. Nancy tried to help me figure out what Liz was spelling before they took her vent tube out.....and it turned out to be sedate me!!! So, when her teacher wonders how she got so assertive, there are meny times we could remember that she said just what she wanted! This year will be fine, I can feel it.

Saw our friend Nan in the Gap, with her daughter Margie, who is getting ready to go on a tall ship for a semester of school and sail around the world for 6 months! What a great opportunity, and it is so good to know someone that has a good, adventurous spirit...They also had a child with a learning difference who is now going to Appalachian State, and Nan tells me they have a wonderful LD program there for students with needs, and Nancy will get good help. Nancy, like Vic, is a wonderful, full of life spirit, and I am so hopeful that Vic will bloom this year. He just has to decide to do it...will see. He is a very special kid, and is real smart, but not sure of it yet himself. Life, fortunately is long, and he will figure it all out at some point.

Becca out, Julia upstairs as she works tomorrow. Becca and I may tackle the garage. No news today on Taylor, hope to talk to Neena tomorrow and will either see her or get an update at Monday clinic. Is a routine day for us, blood, etc. Hope to see our friend Ed, and may take him a goldfish to do the st Jude goldfish in the iv trick....will see!!

Life is good, let us hear from you all. Love ma

Thursday, July 31, 2003 7:23 PM CDT

Is reallly good to read this and hear from my Uncle Bob, and to see his FIVE year report! You cannot know how good to see that five years go by, and then, you keep going.! He is my moms brother, who has lived on his boat down around Trinidad for a long while, and is now back in the states, and is always good to see,

No real news. Jay and Vic gone to Richmond to help Dutch. The truck was loaded up for sure, and they will be very busy there doing wood stuff. They were looking forward to guy time.

Our school meeting went fine. Liz has a very nice teacher for next year, and we really hope to have a good year. I have no idea what she will need, and can really only let Mrs. Riddick know that as as older mom, and also a cancer mom, my expectations are quite different from some of these young trophy moms. I do find it is very upsetting to meet and go over what the needs may be, for some reason. It does not get easier, and all we really want is for life to be long and good. When we think back to all our kids have been through and seen, it has been hard. Liz will spend some time in the class with her teacher this summer helping her get straight, and that may help Mrs. R. understand what I meant about Liz not really being 10, and while I dont want special treatment (yes, really I do!!!), she needs to know that she is not the usual 10 year old....This is the time that Dr. Nadia would say WHY doesnt she deserve special treatment, look at all she has been through!!! So, while I agree, what Liz wants is to be like the other kids. So, we will begin the year on even footing and see after 2 weeks where we are. Mrs. R has years of experience, and we will work well. I just wish they were all going to be here, I miss them already. Vic leaves in just 2 weeks, and I have barely seen him. We helped Julia get her stuff going the other night, and I have been wrecked since.....and Becca, while she has been gone already, needs to be home longer. This is not an easy time!!!

Please let us hear from you all. Mom, your note is good to see, and I know you read this, even though you are right across town. and Bob Nimmo, it is good to be closer to you. Let us hear how you all are!! It is a big help to know things are going well.

Love to all, ma

Wednesday, July 30, 2003 7:56 PM CDT

Hello all! Not much news going on here, just summer days and that is pretty nice. We are sleeping late when we can, and dreading the coming up day that all go back and off to school. We are not ready for Julia to go, and with Becca gone, and we are still not at all liking Vic being gone, so it leaves little Liz upstairs all alone!! Oh well, as she says, she will have to have lots of friends over. And, that is a good plan.

We meet tomorrow with the school and her teacher for next year. Julia had Mrs. Riddick in 4th grade and loved her, so we expect a good year. Liz is writing her goals, and if she does not mind, I will share them. She listed her goals for this year in school:

1. To be treated like all the other kids.
2. To be graded like all the other kids.
3. To have big writing on the board so I can read it.

For some reason, this has just made me really sad, and I know, compared to Taylor, and so very many of the other kids with many more diffficult issues, it seems small, but I think is a great summary of what these BT kids want....can we please just have life back like it was???

Oh well, we are blessed with the school being really on our side, and doing all and more to help her succeed. Nancy Webb is always there, and I try not to overload her, yet I do depend on her so very much as I muddle through the school stuff. My list is long, but really very short....Live well, Lizzie, and all our kids, live well.

I posted on the BT list about our following Lance Armstrong as he won the Tour de France, for the 5th time. Of course, he is a cancer survivor, and his cancer was the same as Lizzie's, germ cell. I wondered on line who his nutritionist was, and what did he eat, and here comes the answer, from a list mom in Austin, Texas, whose son, also a St Jude pt., went to the same nutritionist!! She is sending me the info on what her son, a 6 yr survivor ate and still uses for supplements, and support. The man Lance worked with no longer takes Pts., so we are getting the info in a round about way....Is the internet great?

All of us are fine. Jay and Vic go tomorrow to Richmond to help Dutch with his porch, finishing the screen and finish work. They will be there til Sat evening...and then home. Busy week, with dr appts, clinic next Mon, and school stuff! Becca painted Liz's room and it looks great, and I will do the trim work when school begins. Julia still is working at Skinsational, and liking it. Keep in touch please, we really want to hear from you all. Please keep Taylor close, as I know you are, and know that her mom is finding much peace now, which is a big step from the last relapse in Dec. This is all so difficult. There have been so many, and the list just goes on and on...like I say, our school issues are small in the grand scheme of things, but, we all want things to be perfect! Love to you all, ma

Sunday, July 27, 2003 7:16 PM CDT

We are home! The beach was great, many hot days, and sunshine, and the water was cold! We all had a hectic but fun time, and the week was eventful maybe more than restful!! May see if Becca will tell some of the details, but it was not the usual restful week. Kids are fine, and of course the cottage is great, with perfect views, uncrowded beach, and this year, traffic like crazy! Wish we could have stayed longer, and gotten more adjusted! Was good to see Bart today with his friends come in for their week, they all are so nice, look great, and will have a good time.

We got a new bird, a girl named Bob, as Jay refused to have another girl in the house, so we just named her Bob and told him she was a boy....cant tell with birds anyway! He is so nice, and very tame...is flying all over the kitchen so we may have to close his door. He just flew out of his cage and walked to Becca and climbed her leg so she would pick him up!! Very tame!

Many have wondered about Jay Butler, and he made it to the top of the mountain, and is home. He was in a major snowstorm, and had to dig out in the middle of the night, from 80 inches of snow! He did really well, and is home, and told Jay D he knew while he was there that his mom died, that he had a feeling. So, that is how the world is. Keep him in your thoughts please. Have not talked to Neena this week, but will call in the am and see how things are. Cannot think they are great, as the infections are difficult, but will see. All doing well here, and we have clinic in a week so will see how the height is going. Liz's weight is slow going, but as T. Merchant says, dont worry too about that, as they expect her to have chronic weight issues. Well the rest of us are trying to loose, so we balance out!

Keep in touch, and please sign in so we can see who is there. Is hard to update if noone is reading, so let us hear how you all are. We wonder what you are all up to, and how your summer is. Love to all, ma

Friday, July 18, 2003 9:14 PM CDT

Well, having a great week!! The girls changed rooms and Becca's new room is really pretty and a good citrus green color. She has put her pics all over that she takes and it looks great. Liz is in the bigger room and it feels like her home already, and she is totally thrilled with it. She will get it painted in a week or so. Vic is out at Abbys, and worked today with Melvin doing yard work. Julia is at Matts and tomorrow we go to the beach for our week, and Jay will be here and down probably on Wed. of next week. We are great, and this is the best summer ever....how nice to al be together and here making a mess of things. The Coxe girls were over for a bit, getting Mary Ellens car, and is good to have them running in and out. Now, we need to find a group of fun friends for Lizzie next.....that will be our mission this year coming up! And, what a treat to have something so easy for our mission.

Please continue to keep Taylor in your heart. She is back in KD, and has several line infections. They use mega drugs, and it is not an easy thing and her immune system is very weak. Talked briefly to Neena, but then did not get an answer. Would love to think she is on their way home,and that may be the case, will let you all know. They have been with us since May of Lizzie's first year, so this is not easy. Neena believes fully she will get a miracle, and Lord, I hope so. Usually Leukemia is easier, but she has a chromosomal thing that makes the cells revert back even with treatment, and her hope was the transplant. Gleevec no longer works, and the experimental drug at MD Ander. is useless unless she is well enough to get there. Will see in the am how things are.

Keep loving your life, and paying attention to the things that matter. All the rest is pointless, and falls away. Love to you all, ma

Monday, July 14, 2003 6:29 PM CDT

No news! Rained here like crazy today, and that was good too. Julia and I went shopping for her ECU things and found some comfy sheets, dorm room things and other fun stuff! Made me think of the one day 2 summers ago I got Helen to sit with Lizzie in the hosp, and took Becca out the one time to college shop....Lizzie not only got terribly sick, but also got so bad she went with about 4 staff, respiratory, and Nurse Peggy to radiology to see what was wrong..Helen kept telling them they needed to call me, but they said to wait,,,,oh boy!! Was a while before I left her again, and Helen will NEVER forget that day.

We are light years from there now! Thank God and lots of hard work by Lizzie, all of us and many very smart people.

Anyway, Julia had fun and is nearly ready for school, though we are not! Will be very different here with just Liz, and all the others off at school.

Keep Taylor in your prayers, they are trying to work out a trip to MD Anderson, and a new drug they are pushing for pediatric approval. They are trying to to get to Texas to use this phase one trial drug but it is not approved yet, so more hoops to go through. Neena is confident she will have a miracle, and we pray she will, and if not, find some acceptance. We hope to go this Thurs to visit, and she appreciates all who have checked in from this site...

All is so good. The Growth hormone is going great, and all the kids are well. Jay took Vic to Va Tech Football camp and is safely home, and Vic called, is ok there and learning lots. We have our vacation week next week, and will be at the beach most days. Keep Jane Butlers family in your prayers, and Jay as he continues to climb Mt. McKinley...he will be down in a few weeks we guess.

Continue to follow the Tour de France, and Lance Armstong, as he leads that amazing race. He is cured from cancer, and had the same germinona as Lizzie....we find him an amazing inspiration and watch daily. He is proof that these cancers can be beaten!! Have faith, and watch!

Love to all, ma

Sunday, July 13, 2003 5:00 PM CDT

many thanks fo Becca for the birthday entry! Was very good and had a wonderful wedding weekend with Joby and Mindy having loads of fun, beautiful ceremony, and a very special time. The beach was beautiful, and we all enjoyed it lots. The Church was a very bright, and open Methodist church, and they did look so cute...was fun.

Please keep some of my friends in your prayers. Our good friend Jay Butler, who is climbing Mt. McKinley, lost his mom today..Jane(Sadler) was finishing her last chemo and got a bad fungal infection, which she could not beat. Jay is not able to be contacted as he is weeks into the mountains, and Debbie has decided to wait until he is out rather than try to risk his climbing down to get home, and having an accident. He is days into the mountains and would not get here for the funeral anyway...so her decision is very hard but correct.

Also, our little Taylor is doing badly, and they only have a little time with her. Please keep her family in all your thoughts, as they get through this time.

We have lots of sad things going on. However, life is so good. I wish you could have seen the wedding, and all the love there, and Lizzie dancing with everyone for hours.!! We are living, and well, and the fungus that Jane did not survive is a major cancer treatment risk, and Lizzie was in the hosp for about 7 weeks with the one she survived...we are lucky, and most of us are, so please live like that. Terrible things happen all the time, and we are so furtunate for each day we are here and things are good. Keep them in your prayers please, and also thank God for the months Taylor got, since Dec. really, which frankly gave her mom time to learn how to deal with this. Not much of a gift, but a big one.

Also, Edward Higinbotham, who had a bad boat accident, and is struggling in the neuro. ICU.

Love to you all, ma

Friday, July 11, 2003 7:38 AM CDT

HAPPY BIRTHDAY TO MOM!!!
We are all off to the beach for joby, our cousin's, wedding. Hope everyone has a great weekend!!!
becca

Friday, July 4, 2003 9:12 PM CDT

Heading to beach,in am after the funeral of my good friend Nan's dad. Mr. Lewis was a great old guy, and he was sick a short time, and that is good. We are all going, and then Jay will poss. come home Sun evening, the rest we arent sure about. will see how the weather is.

No news. Girls are out, and Liz is asleep, she has been resting all day, just cant stay awake, and I dont blame her!!! The first week in soo long with nothing to do! It is wonderful to wake up and have the day, and today was really special, with sun out, a neighborhood parade, and no real plans.

Vic at beach with my parents, and Joe and Nancy. We called Nancy at school from Memphis, to let them know all was really good, and could hear them all cheering for us, with our news of good scans....they could not have been better support. Of course, Dr. Merchant, says his germinoma kids all do well in school.....and that it is because they do the radiation there. Fortunately, I agree!!!

Hope you are all well. Keep Taylor in your prayers. Sign in please, and good to hear from Chet Hart, who is an old friend, and also, someone I called several years ago, when I was panicked, and needed many copies of Lizzies original MRI's to send all over the country until we found someone that could say they could help. Though I now know they are EXPENSIVE to reprint, he just said pick them up, and I did,,,,,and then, Hopkins took her....He is one example of the support that though we may not have called then and said thanks, we remember and it means so much. He is the VP at the local hospital that originally scanned her, and found the tumor. He and his family, Sandy, and the boys were always there with a smile and support. We appreciate that so much now, and as we know, we owe so much back to the world. Now, that things look good, we can actually make plans to do some of that. Jay is running a marathon to raise $1,000 per mile......I will have to find another way!!!

Love to you all, keep in touch, ma

Wednesday, July 2, 2003 1:17 PM CDT

CLEAR MRI!!!!
Everything is fine, and she doesn't even have to go back until December, unless mom wants to go sooner for some reason:)
Thanks for all of your prayers, and you are all in our prayers!
luv becca


Will just add to the end of Becca entry!!

We are home, and they have put in a direct flight to Norfolk from Memphis, 1 and 1/2 hours!!

Did the scans Tues and today, and then saw many old friends, and found good and some bad news. Mostly, all are doing well.

Dr. Merchant is doing great, and we met with him about 1 hour late, which is pretty standard, once he takes care ot the things that come up....once Liz was one of those things that come up! He went out to check her scan and came back with a big smile...all is great. Then, he did all the routine exams, which Liz knows by heart, and thinks she looks great. Wants us to get an early Psych. done, so he can know how well she is doing, and then asked what I want to do about followup.......pause,,,,,,and we are now on a 6 month schedule rather than the 3 month. A big step, and if he is comfortable with it, then I can be too. We really feel that he is very confident that she will be fine, and her main concern will be long term endocrine followup things.....and getting her skinny self to grow!! She is a bit taller, a cm., which is more than the last year all together...and weight is about the same or poss. up a bit..so, her goal is one pound a month....... All in all, she is doing super. He is wonderful, and we go back in DEC., which will also work for Jay running the St Jude marathon.....in early Dec.

So, things are good. We are moving to a new normal, and finding how to move back to not going so often. Stange, but we can uppack!!!! and plan, at least for a bit. We are strangly calm, and comfortable, and if you could meet with him, you would be too. St Judes is the best thing we have found, and going there is still an amazing thing. Not all the kids are cured, or even ok, and many if not most of the BT kids have many deficits, too many to list. It makes us feel that we have had it soo easy. However, if you could see the way they all talk, and know every name, and also hug and say hello, it is wonderful. It is quite a cheerful place, and most everyone is smiling. We have the confidence that they are the best. (and our Drs tell us that too).....they do more for kids than you can believe.

So, we saw Seth and Anita, and they look so good, and they are also gracious enough to let us meet their entire families, and the beautiful new neice, Anita's twin sisters child. She is gorgeous. We could not be more welcome, and appreciate it so. Liz will miss seeing them every couple of months, and 6 months may be too long!!

Also, Peggy and Steven were there, and doing well, and look great. Caught up on all the news, and his scans are perfect too.


Many thanks for your prayers. Our friend, Nan Coxe, lost her father today, and keep her in mind....he was sick, but it was fast. Also, continue to pray for Taylor, as they struggle, This is going to be so hard. Duke is doing all they can, but it is her 4th relapse. The blood disorders get a few more relapses than we would get, but she has had her times, and it will be very hard to get her back into remission this time. Also, please know that we cannot pray for Liz without knowing that all these kids need healing..and knowing we are lucky and not knowing why..so,

To add to Beccas older note, Debbie asked what would Liz and our lives have been like had she not gotten sick, ...not had we lost her. I answered our lives would not have been nearly so full, in many ways.. Debbie and Jay have been true support, and our family, the girls, and Vic, have been through a lot. They vent here, and that is good, and the ideas they put are good ones, and I am glad they can write here. This is very difficult on the other kids as well as the "princess" and they own this page as well. I appreciate the input and the pics.....also hellos to Sue and John and so glad Uncle Bob called, ma
Love to you all, ma

Tuesday, July 1, 2003 2:27 PM CDT

Hey y'all, its becca. just a little update while mom, dad and lizzie are in memphis! they were all so excited to see seth, anita and Stephen and his family! They all went out to eat last ngiht and I'm sure they have been in the hospital all day. I read mom's entry from sunday about death being so close to us all, and her comment about Debbie's question about the "what if" things didn't turn out this well. It makes me so mad when people question whether her MRI will be clear and she'll continue so well in her health, and it even makes me mad to hear that people were thinking from the beginnng that Lizzzie wouldn't be ok. It still makes me so angry when people let on that they are unsure and scared of the results, i just want to yell at them " OF COURSE SHE"LL BE FINE:)" but i control myself:) Of course with a brain tumor thats what people will think, but I honestly didn't know the extrmity of brain tumors, I really knew nothing about them to be honest.I mean, I know there was a possibility that she wouldnt be ok and all, but I truly never let myself think about it. Of course I was terribly and overwhelmingly sad, but I never thought about "if" she would get better, it was always "when" she gets better. I guess it is just a concept that i don't see myself as nearly strong enough to face with LIzzie or anyone I'm close to. I still can't talk about her not being here etc., can't even barely write about it. I read lots of caring bridge pages about other children who have not been as lucky as we have, and i ave so much respect for them and honor them so much for their strenghth and faith and hope that one day I will be as strong as them:)
well, sorry to go off on that little random speel. i know everything is going to be ok. julia just got home from work, and i have been playing mom all day helping Ella, or Lala as lizzie calls her, clean house. Is 10 loads of laundry, no exagerration, an abnormal ammount? I sure do hope so cause its really not fun at all!!! You really don't know how hard being mom is until you do it for a day, or a few hours at that! Aren't moms amazing:) Ok im gonna go now. Thanks to Bob Nimo for calling and letting us know he's thinking about us:), hope your having fun on the boat and with the parkers. Have a great day everyone! Luv ya, becca

Sunday, June 29, 2003 7:40 PM CDT

Well, we have been on the MAW trip, home for a couple of days then off to the beach!! which was great. It seems odd to be there, so I can tell we are out of sorts with going, but as is our tradition, I left my bathing suit on the clothes line, which means we are coming back very soon....hopefully next week! Our Island trip really was special, for many reasons, and having all the family together was the main one. Everyone got along well, without tv and IM and phones, and it was wonderful. Were home a couple of days, getting stuff done, and also seeing Jays running buddy Jay Butler off on his trip to climb Mt. McKinley, in Alaska.!! He has been training hard for this and will be gone many weeks, so we are adding him and his strength and good weather to our prayer list please. We had his family and a good friend to dinner, and it was nice. He and Jay have run in the am for many years now, and are very good running, arguing and talking friends. Our Jay is training for the 1/2 marathon he is running this summer with our friend Tom, and they did a fast 10 miles Sat. AM, to get in shape!! Tom Coxe has been a good friend for many years since they moved here with mary Ellen, who is Beccas, age, and they have 4 girls all together, and have been family friends for a while. Tom has run wearing Lizzies name in a couple of marathons, and he is running the St Jude in Memphis in Dec. with Jay. So, we are selling miles, to donate, and send $$$ if you like!!

We had a great beach time, and were there a couple of days. First time in 3 summers we have been more than one night, that is Liz and I.....with no lines, and feeling great. It is fun to slowly see her returning to the old things, and also, having Kate F. to spend the night and giggling til late too. Was good to have Becca and Julia and several of their friends along, and Vic is with Pat, his buddy. Keep the Kings in your prayers, please, as they sort out family things and go through some times of seperation from their 2 oldest boys, some very real trials, and very real need. Jimmy lee and Margaret are wonderful people and they are bravely doing some hard things now for their children that are best, but very difficult. So, keep them in your thoughts. Also, our friend Jarvis' family, as he died last week of a very aggressive BT..they are from Louisiana, and shared our kitchen last summer at the R/Mc. house.

We leave tomorrow for Memphis, and scan lateTues and early Wed., then meet with Tom Merchant about 11 or 12 on Wed. I am very calm this time, and though it scares me, I feel Liz is ok. These tumors are so responsive to radiation, that for her to relapse after radiation would be unusual. Over this last few months, I have thought and thought about things, and know that while we do pray for her healing, so do all these parents that do not have their child healed. It seems that God has let the world go, like an older child that must learn now how to live, and unfortunately, the world is polluting, and not following how God would like us. So, our bodies are not working like they would in the Garden of Eden, and children are getting sick. Some, medicine can heal and some not. God has such power, and now I am beginning to feel a certain peace and resignment to never knowing when all may just fall apart again. The Power of God is all over, and Heaven is all around, and death is not really far from us, just a step. So, we are going and feel good that Liz is fine. I have finally realized that for this week it is best to not think what we would do otherwise, as I am sure facing it would be terrible enough. So, if we get to the facing it step, we will, not willingly, but we will. And now, we are having such a great time. Every day is so beautiful, and look around and see the world, and all it has. Our lives are so good, and when Debbie B. asked what would our lives have been like "if", well, I dont know. But, right now our lives are so good. I hope you all can find the beauty of day to day, and thak God for all that is here with us. That is what I dwell on,...Liz is doing so well now, and life is beginning to return to a normal We owe much to wonderful medical treatment and research, and people who take their lives and do great things for others. Someone will post Wed. when we know how things go, and all our energy now is very positive. Remember we have our phones, and call us ....wil be off in the Hosp. as they are not allowed.

Also, we are going to see Seth and Anita, finally!! this time it seems like a long time...

Pray please for Tom Merchant and his wisdom, and his health. Guide him to look after Lizzie and her multiple needs, which even in health are complicated....and very manageable. Keep in touch, love ma

Saturday, June 21, 2003 9:43 PM CDT

Well we are back and I will say it was the perfect trip. Will fill in details later, but we had the best time . To be together with all of us was wonderful and the kids not only got along like they did years ago, they enjoyed each other, giggled and laughed and had a time like we have not had in too long. The first night, the 4 all stayed in one room and loved it.....the island is really beautiful and I know Julia will put some pics. and Becca will write some details. Just know that for over 2 years we have been struggling and this last week was a return to many years ago when all was perfect!

Back to home,. and thanks mom and dad for the food in the kitchen when we arrived in our limo!!!

Now, Taylor is at Duke, trying some very experimental drugs and none of the Drs. think they will be successful. Please pray for her family and for Taylor, as she fights a rare leukemia. We have been through this together since diagnosis, and I have really seen her mom grow in strength, but, Taylor needs another miracle. Things are very bad, and please add her to your list.

We go to Mempis July 1, so keep us on your list too. This July is one year since radiation began, with the 19 being her first scan during radiation last summer and it was perfect...so this is about one year. We need continued perfection.

Keep in touch, and we promise pictures soon! Will write to Jayne and Jim tomorrow too, but also off to the channel 3 studio for the St Jude fundraiser! Love to all, ma

Wednesday, June 11, 2003 7:29 AM CDT

WE ARE OFF TO ST JOHNS....SO EXCITED AND PACKED, ALL READY WITH OUR STUFF IN THE FRONT HALL. THE LIMO COMES AT 330 AM, A TERRIBLE TIME! WE ARRIVE TOMORROW NIGHT ABOUT 6, AND THEN ONE WEEK ON TROPICAL ISLAND, WITH....PALM TREES, CLEAR WATER, AND NO CRYING BABIES. THAT WAS LIZZIES WISH. OF COURSE OUR WISH IS THAT SHE IS HEALED AND REMAINS TUMOR FREE, . WE GO TO A ST JUDE FUNDRAISER THE SUN WE GET BACK WHERE THEY HAVE ASKED US TO BE ON TV AND TALK ABOUT ST JUDE, AND THAT WE CAN!! AND HELP PULL OUT THE BALLS FOR THE DREAM HOUSE RAFFLE. SO, WE ARE BUSY. THINK OF US THIS WEEK AND WE WILL THINK OF YOU ALL, ON OUR MAKE A WISH TRIP. LOVE TO YOU ALL, AND PRAYERS FOR MATT AND TAYLOR, MA



Well, Julia and I got home from Orientation last night and it went great. ECU is big, but very manageable...and we did walk and walk so we know how big now!! She is enrolled in the prenursing and met lots of other nursing students...there are lots of them for few spots, but like I tell her, college is to teach you what is out there, and if not nursing something else wonderful!! So, graduation went well and then she is all signed up for fall.!! Then Vic and Julia ran off to the beach, and Becca is still at JMU in her apt., clean, alone, and loving the peace and quiet!! Jay home from his trip safely and doing well.

Our visit with Jayne and Jim went well, and we all did love having them here for several days. Was a bit hectic so hopefully they will come when things are calmer and less food preperation and more relaxing!! They look great and we do all miss them today. They stayed with Vic and Liz overnight and we appreciatet that and also, yesterday was Jayne's real birthday, so Happy Birthday to her!

Our good friend Matt had his scan and all was fine, perfect, and Nancy called yesterday as soon as they knew. What a relief. However, Our little Taylor seems to have relapsed again yesterday. I have not talked to Neena, but will, so dont know the plan but I dont know what may be left for her, they have done so much already. Something says this may be the time, as I cannot imagine another transplant, but you never know. They will consult with Duke, and let us all know. I remember the night Taylor was diagnosed, we were of course inpatient, and one of Neenas good friends, Debbie was our nurse. Neena called her and she went to the er to sit a bit, and then Taylor was admitted next to us...with all her brothers, all 4 of them! It has been a long journey for them, with the Philadelphia chromosome, which means chemo will not work, and then the 2 transplants at Duke, meaning months away from home. They successfully used the drug Gleevic for ages, which is a new "miracle" drug for this, but not a cure ....so, will let you know what they are going to do.

Guess we have our MAW this Sat, though we still have no info on it at all...they are rather unorganized it seems and I really need more info, dont even know when we leave.! Now we are home, I am calling and left a mess. last night.

Please all take care, and continue to pray for healing for Taylor, thanks for Matt, and remember our visit in early July to Memphis and add Lizzie for clear perfect scans. We have read a great new book, I recommend it, "if I get to five", by one of the major neurosurgeons in NYC about what kids with brain tumors have taught him. It really describes the life we all seem to lead now, and the changes and joy that come with it. Love to all, ma

Thursday, June 5, 2003 7:11 AM CDT

Has been hard going to update, lots going on!!

Meeting went well and now waiting for Jayne and Jim to arrive today for Graduation.. House clean and beginning the declutter! I found that after last summer, in the one room at the R/MC house, it is easy to live with lots less. So, we are beginning! Julia home and working this week and lots of conflicting emotions here about graduation and leaving, etc. She is a great girl and her leaving is going to be very wonderful for her, with College, and all things new, and very hard too for us all. I have many difficult emotions about it all, naturally!! Fri. is the Sr. breakfast, and baccalaureate, and Sat am is the real thing! We are having a lunch, very informal for a small bunch Sat. and then Jay and I along with a lot of parents are hosting a Sr. party Sat evening....with food, and a band....who knows how many of then will come as they tend to split up by then. Then, Sun is Sr. day at Church, and the Youth sunday, and Julia is participating in the service, which is a neat tradition for her dad and I..Then, Jays family arrives for a cookout, and a pre-birthday celebration for Mama Jayne. Monday Julia and I go to her orientation, at ECU, and then, on Sat, Make a WIsh!!! All is totally great and under control, and we are completely blessed and fortunate to have gotten here.

Had Lizzies end of year conference, and she did fine. She was ungraded, which really took the pressure off of her, and she did well in everything but her math, and she is tutored in that all summer....so, last night she had a friend, her buddy Kate F. to spend the night, and it is fun to hear them laugh and giggle. Our goal now is continued growth socially, and learning ot fit in and play the game that 10 yr old girls play. She is poised and very comfortable and charming with any adult, from any age, but it is more difficult with her own age...they are not all up front and "nice" at age 10, probably including her!!! and she also tends to be a bit bossy and , ,,,,,, big shock to all who have done this .....a bit spoiled. Last year this time, we were leaving in a couple of days to Memphis, and packing the car for an extended stay. The year before, she got home from weeks in the hosp. tomorrow, the day before graduation, with her feeding tube, etc. and terribly ill. Then, right back for chemo and home for 10 days that whole summer. So, this is a gift . I had some idyllic idea of summer, with the breeze blowing in and all the kids smiling and laughing all summer to be home and, well, they are teenagers, and it wont be quite that way!! I am finding out. And, it is still good.

Last night Vic had a crowd on his boat, 4, his boat is not big, and one of the boys hooked another in the face with the lure.......an ER trip, and now Josh has a good summer story!! That is more how our summer will go!!!
Good to hear from you all, and please know we think of you often. Taylor is doing well, and so is Steven. Matt up in Maine is too, and his mom could use your prayers as she is very nervous about his scans, His tumor is gone, and he is finished with his chemo, we think, and his can be more difficult than some...so, please include the Noyes' in your thoughts as they move on in life. Our good friend Jarvis from last summer, the boy whose mom was the wonderful Cajun cook has relapsed and not doing well, and he and Matt were friends and had similar types....that is always scary. The list is endless, as I read my brain tumor posts and hear of good and bad scans, this is our life now. Wonderful life and also some very diffficult times are all blended, and all of "us" know we are just one step ahead running along. Lizzie is doing great, and our scans are July 1, so while Tom Merchant is still very confident, and honestly her odds are great, we get anxious. She is gaining weight, but I wont check her height until we get there...the GH is going great, and she showed Uncle Joe how to do it last night, she is totally on her own with it except for the button to inject...her technique is very clean and the whole thing will be soon...she also arranges her meds on Sun into the week container.

So, life is good. Summer is here, and we are home at 8 am, not running out for some reason! which is good. Becca comes home tonight and we will all be here.

Keep our friends from the Virginia Diner in your prayers, as they lost their little Will Galloway to a brain tumor last week. and Please, if you know anyone with this serious childhood cancer, or any, convince them to go to a major Cancer center...there is a difference!
Love to you all, and will try to update briefly as we go to all the fun things this week. ma

Tuesday, May 27, 2003 7:43 PM CDT

well, has been a few days.!! Still raining here, more rain and more rain.!! Julias Sr day was perfect, she looked so pretty and did so well. The whole day was great, other than of course it rained!! The prom was wet, but Julia had a fabulous dress and was gorgeous. Liz was the flower girl for Sr day and did well, looked so good and will try to get a pic of them on here. Sun we went to the beach, just Liz and I,and leaving town we laughed about for one hour, and realized we needed to get out of town together. Julia was there with her class and Becca there the day before and Nancy and Joe and the family there since Fri. We really have a special time, and to be driving along with her beside me in the Lizzie seat, the front seat where I can pat her leg, is so good. We have really gotten a special relationship over time and travel is lots of fun!! We all got a bit of sun and was good to be there. finally!!!/we look forward to many days there this summer with Mammy and Pappy like old times,and this is the year it will happen!!! Look out, we are planning to be there whenever we can!! They were so loyal coming to visit every day when times were rotten, so will be good to have some fun time this summer!! Becca back at school and Julia out , Vic finishing exams and home Sat. so we finally get summer and it seems like it has been forever!! The last month waiting for summer has been terrible and long. Tomorrow is Jay and my anniversary and he is out of town!! Last year we didnt even think about it, and think it has been 26 years.....we will celebrate later, and please remember, each day is a celebration. Each day is a gift and to be used with positive thought and prayer and laughter.
All is good. Hello to those who have signed, Lisa, is good to see your name and hope to meet you one day, poss. if you get to Dr. Merchant at St Jude....you will get to the good part, just hang on!

Love to you all. Keep in touch. ma

Wednesday, May 21, 2003 8:49 PM CDT

hello all!! Busy day here, which is great! Julia finishing up her week and then she is pretty much finished....she is exempt from exams, all but art one, and then no class next week. She will work some I am sure. Liz had a great day and her field day yesterday, where they spend the day running and doing outside things on teams. She did lots and had a great day. Every day we have to take her to school early, before 8 am, so she can run into early school and play for a while....then, when I pick her up at 2:45, on the dot please, she answers to the ??? how was your day/////Perfect!! what a joy to hear that, and it makes mine the same way too. The positive feeling just falls out of her, and it is a great thing to be around. Today was good, Melvin painting the windows outside, and keeping me busy cleaning out the window sills. Tomorrow if I am lucky, it will rain, as I have begged him to paint my kitchen if it does.....first time in 12 years. and it is time. Why not just tear it all up, and get it done. So, for once, hope it rains.

No real news. My uncle Bob came to town and looks great, he has lived on his boat in Trinidad and the islands for years and is now back on land. Was good to see him looking well. We are expecting Becca to come home tomorrow, but Vic has a closed weekend for exam study, and then , finally , next weekend he is home and we simply cannot wait. It seems like forever for him to get out. Then, when Becca gets out we are here and then leave the next am for the trip. My kids can pack in 20 minutes, so there will not be much getting ready. Liz and I are pros at packing and still keep the habit of barely unpacking, so I am usually about ready to go somewhere, and this will be more fun than the other places we have been lately!!! Jayne and Jim have cut their trip short by a couple of days and we are sorry as the day to relax with them here would be nice... I know the confusion is not always fun. Oh well, we are thrilled to have these plans !! and hopefully they will decide to come earlier. It is no big deal for us, and Vic did want to fish with Poppop, but will plan another time! I do know it is not easy to visit such a crowd as we often are..

Good to hear from all of you and it is really nice to get a note from Marge, Would love to see her family again, maybe another reunion.???? Will let you know how Sr. day goes and how Becca gets home, and if she brings Peter with her. And, no mammy, Peter is not her cat, he is the Swedish boy next door, and we have yet to meet him. Maybe later??? You all know how Becca is!!! Love to you all, ma

Monday, May 19, 2003 8:39 PM CDT

well, be sure you check out the new pics that Julia put up, of the Relay last Fri.night. Liz walked with her dear friend, Pat, and also her good friend, Katie's mom, Pam Askew. Last year, Liz did the lap with Mrs. Fulgham, our back door neighbor,, but Nancy did not walk this year....it is a hard thing often, and we missed her. Last year, Pat had been recently diagnosed and chose not to walk, and Liz had relapsed and we were WAITING to hear from our next MRI and go to New York,,,,so was "that" sort of night. LOTS of tears, for sure! This year, Pat has had surgery, surgery, reconstruction, and looks great and is doing great. Liz you know about, and she is clear scans and doing great. So, off we went. Pam Askew was diagnosed 10 years ago, when Katie and Lizzie were babies, and they were born very close together, a month apart I think. It seems like I remember her 5th year like last fall, but it must have been longer. Anyway, the only other child that walked is Bryan from NC, one of our clinic friends with leukemia in his near 3rd year of treatment. Al and Angela are getting ready to go to Disney for his make a wish trip. It was fun, and Liz has a good time at most anything....she and her girlfriends got right up on the stage to do aerobics with the lady entertaining, and had a ball. She is so shy.!! The survivor walk is very moving, and to see the 3 of them in the crowd of over 100 is something. I feel like I was in the wrong place often, and wonder how we got there, but there we are, and lucky to be there too.!! Then, on Sun, Liz did a duet in Church with
Gail Williams, one of the very good and talented ladies in our choir. She asked Liz ages ago, as she can see her singing from the choir. We got large print books for church, and now Liz sings all the songs....Gail asked and Liz said she would sing with her, and they practiced and did great. Gail had to help put Liz on a chair so they could do it together, or noone would have seen Liz there, but it worked out well. Liz is not shy, and loves to sing and has a pretty voice, and Gail is very good, so they sounded great. There were many tears to see her Honor God with those songs, and what a gift to be able to give back to our Church that has been such a support...they all love her and all of us. Gail asked if she would sing again, and Liz said, sure, anytime....so!!!! All our family was home this weekend..it is so good to have Vic and Becca here, and they finish in a few weeks and it is time. Vic loves his school but I can tell is tired of the year, and ready for summer...like we all are. These last couple of weeks seem almost unbearable. Julia graduates next weekend, and this weekend is prom. Then, the 14 of June all are home and we go to St Johns!!! for the trip. I will say, we need to all be together, and to go away and relax for that long is more than we can even think about right now. We have just missed each other, and this will be wonderful. Now, not many are signing the book, and I will be better at writing if you will sign your name!! Lets us know you are out there, and we need it even when things are going great...which they are. Hope you are all well, and having some sunshine. Please keep everyone in your prayers that needs to be, and always take the day and be thankful, it is soo special. Today is all you are promised, and make it count, and let your loved ones know it please..tomorrow can be great, or it can all fall apart, so make today a good one!!!Praise your God each day for Life, it is such a great gift. Love to you all, ma

Friday, May 16, 2003 7:13 AM CDT

Well, this writing has gotten slower, as I get busier!! Lots going on, beautiful weather, and lots of yard work which I love. Today is the relay for life and Lizzies good friend Pat is walking with her....We know this was a hard decision for Pat, and appreciate her doing it, hopefully she will find it a positive thing. Last night Liz went to choir with Jay to practice her song for Sunday, she and another lady are singing 2 praise hymns, and Liz loves it!! Cannot imagine it, but she loves the microphone and we will see how it goes. Am sure she will be nervous when the time comes. Next week is Julias Sr day at school, a big day for ceremony and the Sr. class does the skit and honors,,,,then walk out and the next class takes their seat!! Cant believe she is graduating, and realize that when it was Becca, we remember little of the process, other than Lizzie got out of the hosp. the day before and was there with her tubes, etc. to see it happen. This will be quite a different year. Jays parents will be here, and we are having a luncheon, casual but fun.....that night a big group of parents are giving a party to the class, and then Sun. we are having Dutch and Penny and Lisa here for a cookout for Jaynes birthday, which is a couple of days later. Also, that same week, I have Garden club here at my house, so that is an incentive to get a bit of painting done....like the kitchen door that our dog scratched, and he has been gone for YEARS. So, lots going on.

The Relay is a big deal, and we now have a purple potty in our front yard, that has been around the neighborhood, and you have to pay to have removed. The money goes to the Relay, and it is all fun. So, in our front yard are 2 now big yellow, nearly white ducks, and the purple potty........we reallly look GOOD.
Vic comes home today and Becca is still here as well, so it will be a good day. Need to get his room ready, and he will be studying as he has a big test on Monday....then a few weeks and all will be home.
Liz has her new calendar, from Make a Wish, and is counting down the days to JUNE 14, which is when we leave for one week on St Johns Island, which was totally her decision. The organization is wonderful, all we do is decide where, and they do all the rest and pay for it all. Quite amazing so donate when you can to the one in your area.

No other news. Will put Sr day pics of Juia up and Liz is the Sr Day flower girl so she will be in them too. All is good here and time is going slow til school out. Liz asking many questions now, with the GH started, about the future and all it may bring. Lots of hard answers, and there are many days we wish we could just close our eyes and have it all gone away. Still, things are good, and we are very blessed...just not simple, easy or what we ever expected!!! Love to you all, ma

Saturday night 2003 8:55 AM CDT

just had Wills birthday dinner and he looks so cute, and it was fun. He is 25, it hardly seems possible. Julia at an art show for a friend, Becca out and Liz in bed, Vic at school and Jay watching a movie....we had dinner with the Nelms, and he ran the marine corps marathon last winter on the St Jude team, in Lizzies name.... was a great thing and we did like hearing all about it. Seems those marines get IN YOUR FACE if you get behind some....that would keep you running.!! Carol always has beautiful dinners and Joel of course is still living in Hawaii mating a boat, the marlin killer.....he is a really good fishing mate.....loves it there, of course. No other news. All is good here, we are so fine, and doing the garden, life is so very good. Not a day goes by we dont realize how totally lucky our family is, and grateful to God for putting all the right places in front of us when we could not find them. He often had to smack us to see them, but we did get there. Jay plans to try the St Jude Marathon in Dec, and hopes to raise $1,000 per mile. The ALSAC staff is already helping him to do the fund raising ground work. So, any $$ will be sent to st Jude, and possibly straight to Brain Tumor research, that way the Drs. like Tom Merchant can use it to find cures for more BT. As I have said here, it was his research papers that I had read, and New York too, that got us to call him, and they publish all their work openly and freely...so it makes a great difference. Keep enjoying every day, and be positive, that makes all the world go better. always ma





will leave the entry, but, the first dose is done!!! "could not even feel it!!!"....so, dont tell the company, they are sending a nurse, and then I will show her I think!! Who wants to wait for the GH when it is so simple!!! We knew we could figure it out, so we did...Great!!!
Let us hear from you, and Lyle, we did not fall in, but went on a great pink jeep ride that felt like Peggy must have when she drove to California....up real rocks, and was fun. ma



Ok, it has been a long time!! Sorry for the delay in writing, but WE were OUT of town! Jay and I went to Phoenix for a few days and it was hot and wonderful. The kids were here with Ella and they got along beautifully, with no problems. A short vacation is good, and seeing Arizona and the cactus blooms was very nice.

The growth hormone is here, and they are trying to get a nurse to come "show" us how to use it....however, we are doing it ourselves today, nurse or not.!! It is a simple pen deal, and a real nobrainer, so we are going on with it....GH is so important in the body, I expect good things, not just growth but many things. There are great web sites for all this, and she will feel better in many ways once we begin. So, may just let my old friend Kathy Rawls, the pharmacist, be sure I have it right, and then go on with it all. Better yet, our insurance is paying 100fter her out of pocket is met, which ususally happens in January. So, on we go!! Make a wish has called, and the final date is not ready but Liz and all of us have one week in St John, at the Westin. Will be so nice.!!!

Think Becca gets home tomorrow or Fri, not sure yet of the day. She is finished with exams, and is home for a week then begins summer school...one class to get ahead in her major.

So, all is well here. Julia getting ready to wind up her year, and graduate, she had done so well. Then East Carolina University for her, which is a good choice and probably my first choice, very pretty, a managable size and close enough to not be lost.!!

Let us hear how you are all doing. We are good and looking back at last year this time, what an amazing year! it has been. Relay for Life is very soon, and Liz will walk that survivor lap. She is a survivor, and so are we. All the kids in this family are, as this is hard on the others as well...they give up a lot in attention, and normal life. However, they gain a lot too.

Enough! Keep in touch, and thank God daily for the great life we all have, and for summer being close!! ma

Tuesday, May 6, 2003 6:15 PM CDT

Hey guys, gosh noone has written from home in such a long time. Well, I had 3 exams today and all I have left is a paper on Great Expectations thats due Thursday then I'm out, home and headed to Nags Head for the weekend. I can't wait to get home and see everyone, especially these ducks who mom just absolutly loves! I know she is so glad the Easter Bunny brought them:)
I was reading Robert's page today, his mom is such a beautiful writer, I really hope that one day I will come close to having her skill. I always end up in tears after reading her entrys. Well she told how her daughter was asking to go to the beach, just to sit alone and listen to the waves and feel the ocean and think. What a beautiful and perfect place be by yourself and have some alone time huh? This got me thinking about this summer at the beach. Mom and Lizzie were able to go down there after returning from Memphis. The first time they were there in 2 years I think, well the other time she had a feeding tube and really didn't feel her best.
I remember waking up one morning from a dream and immediatly going to look for Lizzie, guess the dream was about her:) It was early and the sun had only been up for a little while. I went calling her and couldn't find her anywhere inside so I went out to the deck. I looked down on the beach and there was Lizzie, in just her tshirt running in and out of the waves. The ocean was so calm and blue that day, the sun was so bright and beautiful, and she was so peaceful just running in and out of the waves by herself. This was one of the most beautiful, happy and wonderful memories that I have. Definetly brought tears to my eyes and still does thinking about it. It was as if the day had been made just for her. It was God's way of saying, relax and have fun, and always know that I am here for you, and I think Lizzie knows this.
Well, I'm sure you all know how the littlest thing can bring back the strongest memory, and this has been one of those times for me. I wish I had a picture for you all to share, but it is something that I will always remember and see so clearly. I can't wait till this summer and all the memories and fun I am sure it will bring! I am going to read some Charles Dickens now, and probably for the rest of the night unfortunatly. I can't believe this school year is over! I will be a junior next year, scary huh?! Lizzie has this new thing where she likes to call and wake me up early and make weird noises in the phone to make sure I am awake, sounds like Vic (hahaha), so nice of her huh? HAHA. Well I love you all and will write more another time! Your in my thoughts and prayers!!!

Monday, April 28, 2003 8:51 PM CDT

Hello to all! Its Becca, Mom has instructed me to write cause she need a break tonight. We were talking on the computer for a while tonight, I kept writing her and she did not respond, I finally realized that she could not see my writing until i magnified it by like 100 times. Guess her eyesight is giving way with old age:):):) just joking mom, YOUR THE BEST. Oh, my neighbors got the coolest thing ever. Its an electric fly swatter, it electricutes the flies as you hit them and you can see the spark, I have been chasing them all day. Hey anythings better than studying, and it was a beautiful day. But I seriously reccomend this fly swatter. Well there's really not too much going on here and I know noone is really interestd in what I'm doing, but I promised mom. I'm sure everyone has heard about our ducks that the Easter Bunny brought Lizzie. They are so cute. On Easter morning Lizzie told me and julia and vic "mom was like, you dont still believe in the Easter Bunny do you?" and Lizzie was like "yes, who else would bring me candy?". She said "mom broke my heart telling me there was no Easter Bunny, but now that I have seen the ducks i definetly believe cause I know mom and dad would never give them to me". It was great. She ran in their room at 6am yelling I got ducks i got ducks! mom and dad were like "you got what?". They were surprised, but you know they love them. And a special thanks to mammy and pappy and Mamajayne and Poppop and Pat for keeping the secret, y'all are the best!!! Mom told me today how much she loves how they follow her, waddling around the yard right at her heels all day while she does yard work. Ok, well i have said enough here. I hope everyone out there is doing well and looking forward to summer i am sure! love you all....have a great night! becca

Monday, April 28, 2003 7:13 PM CDT

Ok, Jay and I are actually going!! We cant believe it. Thurs is May day, and Liz has a program at school, and Mammy and Pappy and her good friend Pat will be there to see her. They are good substitutes for Jay and I, and I hate to miss it. However, I guess we need to go away when we can, and this is a chance to go for business and fun. So, we are, and please think of my kids while we are gone, that they are all safe and ok. The whole thing with Liz is easy to manage now, with her taking her own meds. and doing it own her own pretty well,so it is a matter of reminding her. Julia has been here by herself enough that she could keep Liz if I would let her, but Ella will be here and she knows the house better than I do, I think.!! I just tell her, Throw it in the closet and we do, but she at least remembers which closet we threw it into!!

Good News, the GH is coming next Tues!!! and we are ready to start Liz growing. This is great for us, and the insurance has not been worked out, but they send it anyway for St. Jude and then the case manager for the drug co. and my ins. case manager sort it out. I am sure it will work out, as she has to have it, there really is no choice!! unless she stays 2 feet tall!

Please sign the book we love to hear who is out there. All is so good right now it makes me nervous, but on we go, and every day we are so thankful for it all. Our lives are so blessed and wonderful, and all our family is so special. Life is good, and please know that and every day be cheerful and know you are lucky,.We owe so much to the world! ma

Sunday, April 27, 2003 9:12 PM CDT

no news!! but had a great day working out in the yard. We planted lots of our garden, and Liz and Jay and I are doing a big bed right out front where there is lots of sun and we are making a perennial bed like we loved so in Mempis. Liz and I rode around each day looking at the beautiful neighborhoods in town, and they put big wild gardens right in front if they wanted to. One day we walked through one, and it was so pretty. Was a family having cokes outside, and one garden was so georgeous that it made Liz cry and we had to leave,,,,said it made her too homesick for Nancy Ann!! and her yard..... So, we are doing our own, not that pretty but original!

Vic like we said was great. Becca had fun at the races and now has stepped on a nail, so will need a tetanus shot. Julia is over at Matts and needs to get her paper to me so I can send off her check!! to East Carolina......here she comes. It is really hard to think of her leaving next year, so I wont. Liz is not happy about being the only one here. Oh well,. Cant wait til this summer. Let us hear from you all. Love ma

Saturday, April 26, 2003 7:54 PM CDT

just spent forever updating and it got lost....I hate that!! Cannot do it all again, so briefly:

Spent the day with Vic, and his parents day. He is great and doing well, and Jay ran across his old high school friend David Dick, who he knew in 7-8 grade at Baylor in Tennessee....his son is there with Vic on his Lacrosse team...small world!! they had fun catching up on about 30 years of time!! Vic plays well and loves school, and hopefully will keep the good work up until the end of the year and we have summer. JUlia is off at the lake with some girlfriends and has "decided "" on East Carolina University, we are pretty sure. Is about 2 1/2 hours away in Eastern Carolina, and about 15,000 students....has a good med school and good nursing. She will like it and either school would be a good choice so she chose the one she is most comfortable with, and we are happy with it!! Becca is at some races in Charlottesville this weekend, and hopefully it did not rain too hard there...we should talk to her tomorrow. Liz is here relaxing after a good week, and the relay for life assembly at school, where they made her stand up! as one of the survivors. This is our 3rd relay, with the first being the year she was getting her tpn started with such weight loss, last year she walked the first lap with Mrs. Fulgham, and has relapsed, we were waiting to go to New York and St Jude. This year she will walk with clear scans. What a time it has been and how hard it is to get to any normal life.... Jay had his planning meeting and next week we go to Phoenix for a few day on business, and fun...is very hard to leave and I am going as I know I should..and it will be great once we are away and there. It is very hard to do, go off and leave someone else responsible for Liz and all the things that could come up....I make long lists!! ..we have to some time begin to get away, though after so long without leaving it is very hard. Will be fun and we are looking through warmer clothes. Let us hear how you all are,, and what is going on. We love the entries you all make, so dont forget...it means so much. Will try to make better entries here, had a busy week with garden tour stuff, and that is good for me to do and get out some.....hard, but good!!! Life here is moving on!! and it is good. Every day is such fun and so special, and we love it all. Keep in touch, Love ma

Tuesday, April 22, 2003 8:43 PM CDT

Sorry it has been a while!! All home for Easter and it was great. Had pretty Church service, both Fri. night and Sun am and also a good egg hunt at mammy and pappys. Vic and Jay did lots of hunting and fishing and the girls hung out!

You can see from the pics what Liz got for Easter from the bunny sisters....Julia is good at the pic. on the web site....the ducks are cute but mostly dirty. Of course, Becca goes back to school as well as Vic and Julia is not an animal person. We had a good clinic Mon and all the labs were great, along with all the Dr. reports, however Dr. Bevan does feel that if the ducks are dirty Liz should not do a lot of handling as they could carry FUNGUS and other things......so, haha that leaves me. They will go outside as soon as possible...they are cute but not that cute. Maybe they could catch Air Tran to Poppops pond.?????? Missed Jayne and Jim calling and then they missed our calls so we need to call them back this week one night...I am sure Jayne is laughing at the picture of the ducks here and Becca back at school without them!

Jay and I go next week to Phoenix for a couple of days....and I am having leaving trauma!!! Have not left the angel for over a year and I dont like to...however, I know she will be fine..... this year has been fast and the last scan made us feel so much better....next one is July, and that is one year since the rad. began to work. So, we are progressing. No other real news. Was so good to have all at home and we are so blessed with our family. The past times have taught us to focus on the positive and really work at looking and trying to be a positive force on what we do. That approach is so crucial to living well and keeping the negative out of our lives. Anything can be changed to good with work and attititude!!

Had a phone call from Peggy and was so good to hear her voice, how we miss them! She and Jay are debating running the St Jude marathon in Dec. of 03, and as Lyle said, we will need lots of Va wine if they do!! also, just talked to Nancy on the phone and she sounds so great....makes me lonely for them and our time together. Our kids all just have to do well...the bonds and connections are so strong, and we have to plan time we are all together. Maybe next Dec. for the race!!! Please keep them all in your prayers, we could not do without them.
Love to all, ma

Thursday, April 17, 2003 6:57 PM CDT

It is freezing here!! What happened to spring?? Well, Jullia had her game, this afternoon. I left early and ran to pick Vic up from school as Jay couldnt get there, and then we got Liz and ran to Va Beach for Julias game. They won and she SCORED! was very exciting for us all, but about 40 degrees.
Still have Melvin here and his crew doing yard and outside work. We decided to ever catch up with it all, we would hire him to do the basic bed work...and trim the bushes and since he is good, to do whatever he sees that needs doing, including washing the house and windows....it has been over 2 years since they were washed. So, hope for Easter it will all get done, and it looks great.
Becca comes home tomorrow, and then we are all together for Easter. This is the best Holiday of the year, and tomorrow I am trying to do an arrangement for the Altar of bare branches...will see how it turns out, may not at all. What a special year with everything going so well....
Need to run, am late and want to get the kitchen straight..Julia has friends in and Vic is there too. Liz relaxing with Jay and the fire is going. Spent some time yesterday at Johnsons flowers, picking out garden plants, and seeing our old friend Helen....someday will write the tales of Helens time with Liz, may have already....she really pitched in on the hard days, and we were really glad she was a good nurse...we needed her!! Hope our new plants dont freeze tonight.! Love to all, and it is sooo good to see the names in the guest book, and thank you all! ma

Wednesday, April 16, 2003 7:51 PM CDT

not much to say!!! A good day and spring fever is here! The weather is great and we are working on our garden, Liz and I. Last year we planted it and it was beautiful, then, bang and it went to seed. Took 4 men loads of time to weed it for me this week, but it will be beautiful again!! Not much news. I pick up Vic tomorrow and he is home for a few days and then he has one more grading period left. He better not get spring fever either!!! as the year is not over yet! Becca comes too, and we are so glad to have them all here. Becca has been getting worried if we dont answer the phone, so BECCA, WE ARE FINE!! Please be careful driving home tomorrow, as I will getting Mr. Vic. Julia has a game tomorrow afternoon too, and we will all go! It is so much fun. Also Julia, what is your college decision????????????????
Then, have a wonderful Easter.. Love to all,

Monday, April 14, 2003 5:37 PM CDT

Another very pretty sunny day, and tomorrow itsTax day! Am trying to come up with a way to deduct all the med. expenses, wish we could!! We would get a mega refund!!
Heard from Anita, who is beginning a new job, and she is very happy about it...She is a CPA and works a lot, this new job is with a company she audited and the hours will be less with more flexable time off. HOORAY for her, their life is led by God and they are such very special people to us, and her relationship with Liz is very fun to watch.
Called St Jude today and talked to Eileen, the PA in the Endocrine Dpt, and GUESS what?? Dr. Merchant convinced them to do the GH now rather than in the year, even though they have no protocol to do it under 1 year. He feels, and we agree that she needs to grow now, and with Germinoma is should be safe, the GH does not show in studies to make tumors grow, just the good cells. So, St Jude will get the paper work going and they are also going to begin to look at beginning GH earlier in several of the kids, maybe even 3, 6, or like us, 9 months...So, she is their first, it seems and I knew Tom M. would convince them. I also feel he is confident that Liz will not have more difficulties with this tumor coming back, thought it will be a hard wait to find out. Our Endocrine Dr. here, Marta Satin Smith agrees fully with beginning it. It also helps that we have researched it and know a bit about what is going on. So, on to the insurance company, and the $$ part...GH can run $20,000to $30,000 per year, so the ins. has to cover it for us! or Liz will need a job!

All good, glad it is a short week!! Please sign the book, we have a lot of lookers but it helps Liz to know you are looking!! It is always nice to hear from you all. LOVE ma

Sunday, April 13, 2003 7:44 PM CDT

Just took Vic back to ChristChurch School, and he does love it but is ready to be home for the summer! And, we are ready to have him. It is a beautiful, laid back place, not your snobby boarding school but very well maintained....he is doing well, playing lacrosse, and we get him Thurs for Easter. Tues of this week Julia has a late lacrosse game at school here under the lights on the big field...the girls game is totally different from the boys game, much more graceful and more passing, and they are pretty good. It is her first year of Lacrosse after a couple rotten seasons in softball, we were glad she switched sports! They have a fun, nice group of girls and we like the coach, she is a great example to them all and we like the change...Becca is back at JMU and will be home for Easter too..the girls had a fun weekend and all got back safely, so that is what we needed. We expect them to have behaved as well. Still sunny here, thank Goodness! and we are glad to have spring! Jay and I go to Phoenix the end of April, can you believe it? I tentatively made plans, remembering last spring, and as things are great, we are going! Still working on the GH, and hope to have that more settled this week. Is slow going, like I thought it would be, but is a big committment from all the companies, so it must be arranged well. Also, the Endo. Drs. ususally wait a full year from treatment before beginning it, but Dr. Merchant wants to begin now...so will see if he convinced them...my bet is he did. Keep in touch, love ma

Saturday, April 12, 2003 9:25 PM CDT

A beautiful day here!! Sun is finally out and the wind and rain is gone!! Mom and dad went to the beach, and the wind there had been 80 MPH, blowing out the back glass door! that was not covered by the wooden shutters. That is why those beach cottages have those wooden shutters, as the wind off the ocean is strong enough to blow out the windows. Imagine what a real hurricane would do, or if we had forgotten to close the shutters!! Well, we cant wait to get down there some this summer!

Talked to Mama jayne for a while and her questions made me realize most of you dont know what I am talking about when we talk about Growth hormone...so, will do a brief primer, and skip it if you dont want to know!! When we met with Dr. Weingart, in Baltimore, originally, he told us the location of the tumor was Hypothalmic, or the exact middle of the brain. It is the location of all the control and involuntary things your body does....and tumors there cannot be removed as any bit wrong can mean real trouble. He also told us that she would, after surgery need all of her hormones relpaced and that was "no big deal"....the surgery interfered with the connection of the hypothalamus with the pituiary,, and the needed hormones dont get through to her body. She immediately, right after surgery needed a hormone called DDAVP, which replaces Vasopressin, the fluid control in your body, without which you loose all your fluid, and eventually cannot drink enough to keep up, and dehydrate. Your body looses its ability to regulate thirst, and you can dehydrate, or overhydrate, either one of which is not a good thing. They tell the fluid level of the blood by the level of sodium, or salt in the blood ....which is why we get those frequent blood levels drawn....the ddavp is given daily by a med that is a nasal spray....Liz uses the spray at night and will for the rest of her life. Too much or too little fluid can be very dangerous and hers fortunately is under good control.
She also replaces the Thyroid hormone, as the pituitary does not give that off...you all now the thyroid purpose, and it is a pill daily and we check those levels often as well, in the routine blood work. This is pretty simple to do, and easily controlled.
The pituitary also causes the production of cortisol, or hydorcortisone, and the lack of this is the most trouble, as it aids in stress, infection, illness, fever, and must be replaced 3 times a day....the lack of cortisol can cause big trouble, and I think the lack of it was a big reason she had so many problems during chemo, as the tests supposidly showed she was normal, but Dr. Merchant quickly found she was not producing any....so she gets it now 3 times a day, and she also must carry a stress kit, which is an injection that she would get in case of stress like surgery, fever, accident, etc. and the lack of it could, I hear cause death!! For example, when she was hospitalized in Maine, they stressed dosed her by injection more than 3 times her normal dose, so she could fight the fever, dehydration, and illness. so I keep the kit in my pocketbook and at school and one at home,,,,,and she is rarely without me. She is also going to have to wear a Med alert band forever, which we have ordered in a cute silver heart ankle bracelet form! The cortisol is the most confusing one and not very commonly lacking, but she takes it 3 times a day.
The Growth hormone is also produced from the pituitary, and she is producing none of her own....that is why she has not grown in several years and is not gaining any real weight right now, which St J. feels is fine as they dont want her growing wide and not up. Growth hormone, or GH, is needed for loads of things, from bone, teeth hair, and geting taller to metabolism and energy. She will need it for 6-8 years to gain her height,and then possibly into adulthood to keep her feeling good and lots of other things that St J. is researching now....it is the fountain of youth hormone....without it she would never grow, so it is a miracle all this can be done.. It is administered by an injection system, and we will teach her how to do it pretty soon....our insurance should pay most of it, but possilby not all...and it runs about $2,000 per month.!!! So, if we dont take many vacations, you will know why! haha, we do hope our insurance covers it and Liz will need it more than likely throughout her life.
When you think of all this the body does, and that science has enabled us to replace these things, it is amazing. She will be on lots of drugs, but who cares??? At some point, she will have to face puberty, and that is a whole system of replacement on its own, and lots of issues that will be faced down the road. We only get to what we need to right now, and we are thrilled to be able to get to them. St, Jude will work with our pediatric endocrinologist here throughout all this, and ours here is good too...they will all cooperate. However, St Jude does lots of research in all this and Dr. M has written papers on it all, so werent we lucky when he got me on the phone that night/??? Liz will be followed there by endocrine and here too, with them doing the major work now and later running it through our Dr here.
This was long, but hopefully I have cleared up some ??? that my family had, and please ask...it is very complicated but really simple too. As Dr. Weingart said, it can all be replaced!!! Liz puts all her pills in the weekly holder each Sun night,and she is remembering to take them on her own. She may as well!! The GH is being worked out now, and we hope to start soon. She will eventually reach a normal height, and hopes to be taller than her sisters!
Love to all, ma

Friday, April 11, 2003 3:32 PM CDT

Well, we still have nothing but rain, and cold. Our backyard is underwater, the river has closed the bridge, and it is just not April weather here. Oh well, maybe for Easter.
Becca arrived last night, for Julias birthday dinner. She got her cast off this morning, and now the 2 older girls are gone to visit a college for Greek weekend....I worry but Julia is going off next fall, so everyone says she is old enough..they are good, just often a bit wide open... Becca looks great and is off in her new straw hat, flip flops, and smile.
Julia turns 18 today. It seems impossible but she is , and how she has grown over the time recently. We did go look at ECU this week and it is a nice school, 20,000 students but feels much smaller. Is an easy drive, and she liked it. The town is not a big as South Carolina, but is doable, and they have a good nursing school. So, she will decide. She got pearls from us, which we do when the girls turn 18, and hers are champagne color, and I like them lots...she may run look at several next week as it is a very personal thing, and she should have the ones she likes She got $$ from Jayne and Jim, which she is always thrilled to have as she can make it go a long way, and a very pretty ring from Mammy and Pappy that they went to pick out several weeks ago..is white gold with diamonds and a pretty stone I cant remember the name of. Julia has been such fun this year and it will be so strange to have her gone next year...the time is going so fast.
With Lizzie, I find I am wanting the time to fly...the next 4 years being so crucial with the worry about relapse, though at this point I must admit to a real peace. After her last scan, I find I am able to move ahead, and we are beginning to be able to forget some each day about it all. I think with the beginning of growth hormone, I know Dr. Merchant would not begin that if he thought she was going to not do well, and it is time to get her growing.! Our next scan is early July and that is one year since the call I got in Memphis when T. Merchant said everything looked perfect...meaning the scan showed tumor that radiation had worked on and was doing just what they wanted. As we know, germinoma's are very sensitive to radiation, and are about the only brain tumor with children that they will say, they are curable fairly easily with the correct treatment. New York is now doing chemo followed by radiation, as the protocol Liz was on has proven to not work in over 60%....radiation works nearly 90% and Dr. Merchant has not ever had a failure with germinoma...so, when my friends talk about time, and turning 50, which I will in a year, all I say is bring it on!! I simply cannot wait.
Jay is off to bring Vic home for the weekend and they are going Turkey hunting and then fishing...Vic is doing well and we miss him, cannot wait to have him home. Mocha is riding along and Vic's friend Jake is here from London to visit, so they will have a great time. Jay is training to run a 1/2 matathon with our friend Tom Coxe in the fall, and then hopefully a full marathon in the winter, maybe in Memphis for St Jude. Will see! Keep in touch all, and take care, love ma

Monday, April 7, 2003 7:08 PM CDT

will take just a bit, as the ball game is on and do want to see some of it!! More rain today, YUCK. Lots of rain, but also washes away some of this pollen, which is not fun.
See that our cousin Joan Stallings has signed the book, and it is fun to see who actually reads this....must be slow days. However, I am having fun with it, and wish WISH that everyone else in the family would add their bit.!! Thinking of Joan and Sonny brings the family reunions to mind, where we go to my grandmothers old river house that my cousin Ann now lives in, and the other house that Sonny uses as a fun vacation place. It is on the Nansemond River, and for the Mississippi crowd is nothing like that river, is slow, pretty, and usable for more than looking.....lots of boats, etc. My kids will never forget Sonny taking them tubing, and of course the driver's responsibility was to go as fast as you could, and throw the tuber off into the marsh or some other uncomfortable place.....the girls will always think he is a bit "out there:" and, happily, maybe so!!! Jays's first reunion, Sonny had a fireworks fight, with him leading his platoon around the area and firing at the rest, divided up into teams....Jay had a ball and as I was at a ball game called to tell me Sonny had set the roof on fire with the bottle rocket firing....they did put it out with a water hose, but some damage was done. Reminds me of my asking Seth this summer some question about Memphis, and his answer was "I believe you can", which is basically permission to do whatever. Sort of the same attitude, which has served us all well. My cousin Ann now makes us all wear eye goggles to have fireworks fights, as her family has not only experienced the entire marsh catching fire, but her son's eye getting burned from this fun....We really wanted to get Julias friend Matt out there for the fight, as his father is a retired fire fighter and that would have been fun.....as most of the other cousins are grown now, Liz and Vic will miss most of this fun....too bad too,..Maybe this summer, one more time. The last reunion Liz was having chemo, and I got to go for just a bit, but would be good to see all the Texas group and North Carolina again together.
Jays parents are coming up for graduation, in June, and we are having Dutch and his family here too, so we will all be together and it has been a long time on that side too it seems. Hopefully we will get good pictures, as they dont come from sunny Fla. all that often and it is a real treat. Jayne and Jim did come to Memphis this summer, where it was 100 degrees and very humid, we did the mudd Island thing which we love but it was hot for Liz and Jayne...they did see our room at the RM house and tour St Jude, so that was good. Hopefully our get together here will work out well too. Is for Julia's graduation and Jaynes birthday.
Liz is writing daily now on email, so to get on her list, send your address. She does it entirely on her own, so be prepared. All is great here, and we are good. Keep in touch, we love it. ma

Saturday, April 5, 2003 7:57 PM CST

What a beautiful sunny day! We worked in the yard all day, bleaching all the outside and loving the sun. Julia worked, Liz shopped with Kate Flintoff, and Becca slept at JMU in the sun it seems. Vic had a game in Richmond, and we will see him this Tues play at NA, the team in Norfolk. Liz took her own $$$ and bought a shirt, and had a great day....doing normal things. What a relief that last set of scans are to me, I am amazed at how upset I have been...think it is being away from St. J. and not having anyone here to really trust, and so much going on with the admission in Maine, etc. The endocrine stuff is getting done, and we do have our wonderful Dr. Marta Satin-Smith here, to coordinate with Memphis...she is good I think and in agreement with beginning the GH soon...Takes a bit to get it straight, and lots of coordination with the ins. co, but St J. does all of that,....it is $$$ each month, and goes for years, so it is a committment for the ins. to do this, but Liz is really clearly GH lacking....so, on we go.

Kate Flintoff is spending the night !!!! our first overnight guest....what fun. Liz has made such progress this winter, and socially she is catching up so fast. I think the stress off of school, and the grade thing has allowed her to relax and focus on being 10 and growing up....Hallelujah.!! God is giving us gifts everyday and it is amazing to see. Kate will go with us to Church tomorrow and that will be good too....Church means a lot to us, and to Liz, with so many special people there..prayer, of course is how you get through all this, though someone whose husband is newly diagnosed with leukemia, and not doing chemo yet, said she feels God allowed this for some reason they will find out, and all I could think was, yeah, you will find out something and it will be mainly about how hard this all is, and I guess I feel God is fairly neutral about who gets sick, not stopping or picking who....HOWever, God has guided our path with all of this and been faithful in holding us up and sometimes even driving the car home from those late kd nights and late change of shifts....My God is heartbroken that Liz got sick, and the "gives and allows" point of view makes little sense after seeing all these kids be so ill and often not make it...Would your God try to prove or teach something by what Liz has been through??? I bit my tounge as they are new to it all, but as her husband is Philadelphia Chromosome and due to have stem cell transplant, they will learn about that.... if you want to see how much fun that is, go to Taylors website, she has the same and has had 2 transplants,,,,,,Guess the allow word is just one I dont like....sounds as though He does not allow it for some, and allows it for others.....Our lives are now totally in Gods hands, to do what He will, and hopefully we will find something useful to do with ourselves.!!! Kate is going to Church tomorrow and that is good, Liz wants company with her. Liz really wants to sing praise music in Church too, but dont think that is going to happen, our congregation is just too old and unchanging and likes only the traditional things, and that is why there are fewer and fewer there!! So,, we are having a good spring, and the weather here is great, but bugs out already and that is not a good sign. Miss Becca and Miss Vic, so hope they will write and cannot wait for them all to be here this summer. Last summer we were all spread apart, with Liz and I in Memphis, Jay back and forth, Julia here working, Vic here lots and Becca living at the beach....the summer before, Liz was honestly in the hosp all but about 4 weeks, and we have not been to the beach more than 3 nights in 2and 1/2 years, which for us is a big deal....we usually spend all we can there. So, my ideal summer would be a good trip to Memphis in June, with great scans, and this time I told Dr. Merchant i want to see them, as I have not in a year, just could not look at them after New York....too real I guess. So, clear scans, in June, then all of us having days of sleeping late, breakfast on the deck looking at the ocean and the dolphins, and dinner with the sunset....good surf for Vic and calm waves for Liz, and what else, the kids will have to add their ideal times, and Jay, if I can get him to!!! Maybe the kids will even tell the time Liz was in KD and Julia came in to see me and had just gotten a ticket driving down the road, Becca came home from the beach with an underage ticket for drinking, and Jimmy Lee King called to tell us that Vic, while staying with Pat at the beach, burned down acres of marsh, which happened to belong to the Nature Conservancy.......that was a big day.....we did not call Sonny, my cousin, who gets us out of everything though. When Liz had her surgery at Hopkins we drove up in a major snowstorm, and in 4 wheel drive, got a speeding ticket while going 40....reckless driving too. We did not even worry about it, I just said, we wil call Sonny, and we later did and he got Jay totally off....he will never know what that meant, to know that was just taken care of. We have had so much help and support, and this is a good place to remember all that.!! Keep in touch and sign in, it is so good to see your name!!! Love ma

Friday, April 4, 2003 8:51 AM CST

Will update quickly, and then maybe some one else will later!

All going well here, and what a good feeling this is. This is now a year since Liz relapsed, and her scans remain clear...since last July really when Dr. Merchant called to say they look perfect. He does not waste time,just says, this is Tom, they look perfect. Knows we cant breathe until we know!! So, now, we have lots of stuff going on! Julia and Vic continue to play Lacrosse, and Becca is coming home next week to get her cast off. Then, it is Julias 18 birthday, and they go off to Hampden Sydney for Greek Weekend, that Jay said Julia could go to....?????? Easter is soon, and they will all be home. Jay and I go to Arizona for 4 days the end of April, and Liz has May day, and then we begin Relay for Life, Sr. Day, Prom, and the end of school, and graduation. We hopefully have our make a wish, and then back to Memphis for 3 month check, then Jobys wedding July 12. Is that enough for someone that makes no plans/???

Pat is recovering at the beach with her sister, and hopefully resting!!! Julia bought her some tiny little shorts, and Pat can pull it off!

Need to run do junk, will get the girls or JAY to update later. Remember to Thank God for all the good news people have gotten and also all the great things all around. Say a prayer for our friend Jarvis down in Louisiana, who shared our kitchen this summer, as he has relapsed and is home not doing well. Matt's family is in Disney, and there are many that I did not ask about...we know many do well and many do not. We are just blessed. Love ma

Wednesday April 2..............Tuesday, April 1, 2003 6:02 PM CST

Will simply add to Julias update. Had a wonderful trip to St. Jude, and all the appts went well. Liz scores high 90's on her speech evals, so the aphasia from this summer continues to be better, the speech processing difficulty from the tumor...the endo. eval went well and we begin the ins. part of the growth hormone and hopefully the actual treatment in a few weeks. this will replace the growth hormone she is not producing and allow her to catch up grow and be a normal height. We will replace all the hormones as needed through her life, and it is a true miracle that science can do this. Otherwise she would remain the size she is now....Our meeting with Dr.Merchant went well, he is tired and needs spring, but Liz is doing so well there is little to check but the dreaded scans. I think I have been having a breakdown for the last couple of weeks and could do nothing, so could not focus on anything until the mri's were done. Guess this being a year since that call, it was a big thing for me...not for Jay, or Liz, who said they knew they would be fine. Anyway, Kristy, Dr. M's main nurse is on vacation, and on Tues he does research in the other building, so we scanned and waited and left phone no.s so he could call us when the computer had her results...which with him not there we knew could be a while. My crowd here is used to his reading it within about 10 minutes like last time, but they were terribly busy on Tues...so, we went to the shuttle and met Dr. M. and his buddy Dr,. Krazen headed out to lunch on a sunny day. I resisted grabbing his arm and running him back inside, but he casually chatted and said he would get back and check them and call.wrote my cell no. on a paper scrap....we knew they were headed out for a break and he is soo easy going about Liz being fine, so we went to the zoo. And, the call came, that the scans could not be more perfect and they looked great. So, our plan is to go back in late June, do the 3 month thing and now, with her over the year since relapse, I truly feel she is, as he told her she would be last summer when she left, cured.... Tom Merchant is very confident and so through, and truly the most well known for these tumors for both treatment and research.. and we like that. It has been hard for me to relax but now it is time for a bit .....then Liz can too! Germinomas are curable with radiation, and that is the main thing to know. (they are not cured with chemo alone, the studies are showing,) So, good news again, and we are moving on.!! When I read the web sites of my BT friends, and see that they wait for days, weeks and we used to always wait for 2 days, I should be amused that I am impatient at not knowing for several hours. We never have to wait overnight....so, we are blessed.

Now, we can plan our Make a wish trip, some beach time, Joby's wedding and our trip to Memphis this summer, and we may take the whole crowd as Memphis is a great southern city that we really love.

My parents had their 59 anniversary yesterday so best wishes to them. Julia did well home alone, we appreciate all who took care of her and mama Jayne calling nightly, and Becca, I wish someone could have been with you as I know you were a wreck waiting and thinking we were not going to tell you !! We flew home in time to run to Va Beach and see Vic play his lacrosse game, and got to give him hugs...he looks wonderful and is doing so well..was very hard not to toss him in the car and bring him home! Good to see all on the guestbook page, and thanks for signing in, it means so much. Lyle, we know you go back soon and will hear the same news. Our kids are survivors!! Pat, have fun at the beach, and heal, rest and we will see you Sunday. Keep in touch and love to you all. ma



Hey ya'l,
This is Julia, Lizzie and my parents are still in Memphis so I am updating. I just wanted everyone to know that the MRIs came back and everything was CLEAR!!!! yayyy!! We are all very excited and thankful for that good news! Thank you all for all the prayers, they really do help.
love, Julia

Tuesday, April 1, 2003 4:52 PM CST

YEAH CLEAR MRI!!!
Everything is perfect and the scans can't be better. She'll start growth hormone soon etc. etc. Mom will write more when she gets home cause i dont really know anything else going on in detail. Of course I was a wreck all morning. lizzie called at 8am to wake me up...so cute. So mom tells everyone that the mri is at 2 so we dont wait around all day freaking ourselves out. But of course we all found out it was at 8am. When i didnt hear from her until about 3 this afternoon i was so scared. i knew everything was going to be ok but not hearing was not fun at all. i called mammy and pappy and pat and of course they were all as nervous as i was. all i wanted was mom to call and say everything is fine, go to class and stop worrying, and she did finally after my first 3 classes. But it is clear and that's all that matters! its a beuatiful day here and i am about to go outside and enjoy it, thank goodness the snow has melted! Lizzie was eating an ice cream cone when i talked to her so she didnt have too much to say. She had to take her earrings out for her MRIs obviously and is too scared to put them back in. I was like "lizzie, you can get ivs and shots all day but won't put your earrings back in?" she just told me to please shut up and not say anything else about it, she can get them repearced if they close up. also, she lost one o fher earrings and refused to put mom's diamond in to replace it! who refuses diamonds????? haha, oh well. luv and best wishes to everyone reading this. thanks for the prayers and i will continue mine for everyone out there! becca

Monday, March 31, 2003 7:34 PM CST

hey y'all, its becca. I just talked to lizzie and mom and dad and all is going well there as expected. Lizzie got the spinal MRI today and will get the cranal one tomorrow 8am. Glad its earlier now as I know we are all so apprehensive in the waiting. I pray all the time for it to be clear and am confident it will, and talking to dad really encourages me. Dad is always so positive and confident. He has great faith and has really helped us all, including mom, get through it all and relax to some extent:) Lizzie went to the speech therapy and was about 98% they say, sounds good to me but I dont't think anyone has ever doubted the power of her speech and conversation skills, though her jokes can use alittle updating (im sure she'll take any suggestions offered as to new ones y'all). They are going to eat tongiht with Seth and Anita, Lizzie was a bit hyper on the phone in excitement of seeing them of course. Not too much going on here. Weird how 3 days ago my roomies and I were laying out in the sun and yesterday it snowed about 4 inches huh? it was pretty though, but we are all ready for the Spring. My whole family will be together this summer for the first time in 2 years so that should be fun and ummmm interesting. I think mom, dad , lizzie and julia have adjusted quite well to vic's and my absence, we are a little umm wilder i guess you can say then the rest :) but it's gonna be great and much needed. Ok well I have about 400 pages to read of Charles Dickens before tomorrow, its much better than physiology or anatomy i must say, so I better get going. Just wanted to let everyone know that things are great so far! Pray hard for a clear MRI tomorrow! love to everyone becca

Friday March 28 Thursday, March 27, 2003 7:25 AM CST

Will just add here, a very short note. Liz took the bus home with Keela and we just got her home. She had a wonderful time...and it went well. Rode the bus and played all afternoon, then we picked her up. Pat is home and looks great and doing well, major surgery and she looks like it was nothing. She often pushes too hard so I hope she allows herself some sleep so she will heal faster. We just talked to Vic and he is well, we miss him. Cannot wait til the summer when they are all here. My friend Carol in Canada with a son, same tumor as Liz;s had their MRI results and they are fine, 3 years out....hope that bodes well for us too. Liz looks great, is full of energy, good grades in school and we feel she must be fine. I know this is hard for Becca being far, and Vic and Julia being here alone and waiting but the wait is there, and we must do it....Please keep all in your prayers as this is a hard time for us all. I think we all just need some time together for a change, and some days to sleep late and be a family instead of all spread out all over. That is what we will have this summer and it seems so far away.!! All is good here, the city is digging up our pipes on Mon, as they are old, about 100 years and made of terra-cotta rather than iron or pvc....they have all fallen in and will be replaced....lots of fun, backhoe in the front yard, mud all over, who cares, just fix it!!!! And, they are. As they worked today, in the deep, 7 ft ditch filled with sludge and muck, my back door neighbor, Nancy Ann walked out with me, looked down and smiled, said Good morning, are you having a great morning"???" They just looked at her.....She is a great friend. Keep in touch, and add to your prayers my parents, and Jays, as they wait for results too. My dad is up each day about 4 am, talking to God, and feels sure Liz is fine now,...so do I, I just hope Gods idea of fine is my idea too. Love to you all, ma

Well, finally stopped raining here, and we are able to be outside. For the first time Liz and I were in the yard working and it is one of her favorite things.! I remember the chemo year, Seth and Anita's gift of seeds and a little greenhouse, maybe from Seths wonderful parents, and we grew tiny little tomato plants. That summer they took over the garden and we picked our last ones that Christmas Day...we made is a real celebration. One thing we have learned is to celebrate every day. Not a day goes by that we dont laugh and totally enjoy something going on...whether it is Katie dog running to meet our car, the sun coming out, or Jay and I just watching Liz walk into school with her whole body smiling and walking like there is nothing better than this. And, there is nothing better than this. To watch our kids, and the way they have learned to love each other is beautiful...they always say how they feel about each other and that is a gift. So, last year this time, we were just about to get our April MRI, "that" one, and we were innocently digging up the garden area and planning our summer at home. The scan was mid April, and that is the one that took 3 days for him to call me...the longer you wait the worse it gets, of course. And, I called 2 times a day to find out, getting more and more angry....finally Karen, the neuro/onc. nurse took the scan to Dr. B. and tossed it on his desk, and told him he had to call right now...we are so glad to be under the main care of someone else right now, as that sort of sloppy care is terrible. He had called NY, but still, ...So, our garden last year was planted and beautiful, and then we left and it went to ruin....noone had time to do anything with it. So, this year we have seeds again, and will see if we actually get to have it. No plans, will just see.

We are waiting for the plumber, as our old drains are not running and are backing up through our old roof pipes, if you can imagine...rain water in the most unusual places and a real mess. Julia has a game today and Vic we thought did Sat but not sure now. Sun we leave after lunch and our scans are Mon and late Tues. so Julia will update when she can. She is here alone, so keep an eye out for parties.!!! We are making plans to eat out with Seth and Anita Lizzie and I stopped to visit Pat, in the ICU step down unit...she looked great and will do fine...she and Liz are such close friends, it is really interesting. Liz is lucky to have an extra "mom" and it makes me feel good to know there are plenty of good ladies she can go to. Julia bought Pat a tiny pair of shorts like hers that Pat liked and the killer is Pat will be able to wear them and look cute in them.....Julia is a thoughtful girl and is debating where to go....we look at East Carolina April 9, and then she will decide, but she sort of likes South Car. better but it is far....it will all work out I am sure. Either one of the 2 have nursing and are good choices. She also got into George Mason in DC, but that is not in the running at this point. Will see what she picks. Am trying to schedule Becca cast coming off as the appt. she made was changed as the Dr. is out of town and now noone else will see her, is very inconvenient and too much driving for her the day they have chosen. I am going to call today and beg. Vic is busy with lacrosse and his grades were pretty good, we are so proud of what a good kid he is. We miss the ones that are off at school!!


Please sign the guest book when you read this, as Liz checks it to see who has. I love your email too, and may try to find a way to transfer it to here so she will have a record. We like to hear what you are up to as well, and how you all are...love to all, ma

Monday, March 24, 2003 6:38 PM CST

HAVE TO ADD A NOTE, JUST HEARD FROM NANCY, MATTS SCANS TODAY WERE CLEAR!!!!!!!!!!!! SO, ALL IS WELL FOR HIM THIS TRIP. PRAISE GOD FOR THE GREAT NEWS.



Well, no real news here. The weekend was absolutely beautiful, and we are so glad to see the sun. We worked outside and pulled ivy until my arms hurt! and then pulled some more. Lizzie has a bit of sun on her face and arms, we are so impressed!! Julia has her first lacrosse game tomorrow, and we got Vics very good grades today, and we are proud of both of them. Becca sent pics. of her room rearranged and it is even clean in the pic. too, so we are proud of her as well!!!

Please keep our friend Pat in your prayers, as she has her reconstruction today. She is such a special friend to Liz and they are as close as sisters I think....Kevin, Pats son said her surgery was shorter than expected and Pat even called Liz a bit ago from the ICU step down unit to tell her she was doing ok....I just say thank Goodness for those morphine pumps!!. We have an appt. tomorrow afternoon and will run in Norfolk Gen. to leave her a card, and let her know we have been by...then will see her when she comes home. I am sure she will do just fine and hope she will take the needed time at home to recover, as Pat is one to push and not sit around....maybe this spring she will take some extra days to be outside on her deck and just have some tea and sit in the sun.

We are getting our stuff in gear to go to Memphis this Sun, and of course I have the pre scan jitters. Jay is as always confident all will go well., and Dr. Merchant is as well. Hopefull we will come home with the growth hormone ready to start, and by the summer Liz will begin to grow taller! which she is definately ready to do. Keep us in your prayers for clear scans please..that is all we need and we can deal with anything else. Also, for Matt and the Noyes, who are getting their appts. this week and we wait for word of how well Matt has done. They are our special friends from Maine, and again we miss them by a few days, this time before us, and last visit just after us....we are off schedule with them by about 4 days!! We may make a request the next trip.

Seth and Anita, look out, here we come! Cannot wait to see you two and will call you later this week. We want to go to dinner and have Mon or Tues night free...will call.

Keep in touch and please sign in, we love to hear from all. Keep the prayers going, and Love, ma

Wednesday, March 19, 2003 8:02 PM CST

Thursday: am so proud of JUlia doing the update I will leave it a bit. My kids are wonderful, could you guess? Last summer, Julia ran this house. Becca was at the beach living with some friends, and that is where she should have been, as the lease was signed and it was time to let life continue in spite of more treatment. Julia was here, and she looked after Jay and Vic,and the house was perfect, meals were prepared and she is truly someone we are very proud of. This has been a family illness and we have all grown and been made different and in many ways better I suppose. They all watched Liz grow so sick and had a major part in her healing. Of course the scans coming up make me a wreck, however I do remember Tom Merchant telling me over the phone the first night I spoke with him that he loved treating these brain tumors as germinomas were so easy to treat!, so we move on in faith with that. Life is forever different and sometimes I just get so tired...wishing it would go away and of course it wont, and the knowledge that all is just perfect will never be there. However, what a wonderful life we do have and what a gift it is to know your life is a gift. It puts us so far ahead of the learning curve. Tonight I heard Liz, at my dad;s 80 birthday dinner, say she didnt want to hunt Easter eggs this year. I looked at her and said" well, you dont have to hunt, after all, you know the bunny didnt really hide them"...Well, after the past years, she looked at me, and yes, she did think the bunny really did hide them...who does then? and, some of the kids in her class also said Santa wasnt real, how about that?? So, we of course told her Santa is truly real, and the tooth fairy, and and I am sorry I never thought she believed in that little bunny!! What a Blessing to have that faith in the world. She feels so secure after all this that she knows the world is good. We are Blessed, by my dad being 80 tonight and singing some song about some tom cat and Lizzie and the Easter Bunny.
Now, please say prayers for my friend Matt and his mom, as they are getting prepared to send Matts brother to boot camp this weekend and Matt goes back for his scans early next week. Nancy his mom needs our prayer and positive thoughts, as they prepare to make decisions about continuing a chemo that is rather unknown in the long run, and also find out what the "dreaded" scans will say. Matt is our Maine friend, and they are so special to us. We should be there with them, and miss them again by a few days. So, please include them and pray for continued remission and a forever total healing for Matt. Love to all, ma


Hello everyone, this is Julia
My mom and Becca have been updating so I decided it was my turn. As I was reading Beccas entry it brought back many memories from the past few years, you know the ones that you try not to think about. I was thinking about the first time I found out Lizzie had cancer. Lizzie was having trouble seeing the blackboard at school, so my mom scheduled her an eye appointment. Liz had been thinking about it for awhile and she decided that if she were to have to get glasses, she wanted them to be pink, My mom called on the way home from the eye doctor and when I answered the phone she sounded like something was wrong, like she was panicking. I asked her if something was wrong and all she could tell me was that she was dropping lizzie off at the end of the driveway and she wanted me to pick her up because she was gonna go to my dads office. I met liz at the end of the driveway and she was smiling and happy like usual, so I figured that everything was ok. I asked her what the doctors said and if she was getting pink glasses. She didnt really know what the doctors had said but she mentioned that she might be getting an MRI the next day, she did not know exactly what for. A little while later my mom and dad came home and were acting upset but they would not really explain what was wrong with them. By then it was about 6 oclock in the afternoon and I was supposed to be at school to watch a basketball game at 5:30, so my dad and I got in the car (me in the drivers seat because i was 15) and headed to school. On our way there my dad began to explain everything. He told me that the eye doctor discovered that something was in Lizzie's brain pushing on her optic nerve that was causing her vision problems. He said that the doctor thought it may be one of many things, one of the possibilities included a brain TUMOR. That was the scariest word I had ever heard come out of my dads mouth, tumor. Its one of those things that you never think it will happen to you, but when it does you don't know whether to believe it or not. I didnt know what to say or do, the road in front of me became a blur as my eyes filled up with tears and my whole body began to shake. Its a wonder we didnt wreck right then, thank goodness we didn't. My dad told me to "be strong for him" so I tried my best. We pulled in the school parking lot and i told him goodbye and as soon as I got out of the car I lost it, I was in shock and heartbroken, a horrible feeling. Luckily, I had some good friends at school that calmed me down. I soon found Becca who was at the basketball game and told her what I knew, which was not much at the time. Needless to say, it was a very emotional moment for us. We just stood in the school hall hugging and crying...feeling helpless. We left the game and went home and tried to stay strong for Lizzie. Lizzie was young to understand what was going on, she just knew we were all upset. I remember that night as she tried to comfort Becca and I, her little 8 year old voice telling us "it will be ok, the MRI won't hurt me." Lizzie was right, the MRI didnt hurt her, it was the aweful news that we received from it that hurt all of us. It was then that we began our journey. Lizzie has come a long way, she is an amazing girl just like all the other children that have endured so much. All of the kids are angels whether they are here on earth with us or up in heaven watching over us, they are all amazing. I am sooo thankful that Lizzie and our whole family have been so lucky. At times, like many of you know, it can be a very difficult experience, but we have all learned so much from it and it continues to make us all stronger people. Its so sad to think of all the children, and people of all ages who are so sick, and that is what has made me want to go into nursing. I want to help all the children I can and I want to try and give back what soo many nurses have given my family. We couldn't have done it without them. They were there to console us when we needed them and they did and continue to help Lizzie in any and every way possible. Well this is now extremely long, I apologize, it was just one of many events in the past few years that I find myself thinking about often. I am going to go now, I have a term paper to finish, not much fun, but I am almost out of school. I just want all ya'l to know that me and my family continue to pray for you. I find myself reading numerous caringbridge pages each day, and it really makes me realize how many children need prayers and miracles. And I am praying for you and hope that one day everyone will be able to receive the miracle they need. Also, please pray for Lizzie (and my moms sanity, :) just kidding mom) as she is moving closer to her trip back to St. Jude's for her MRI"s. Pray for a safe trip and clear MRI's!!! I know everything will be fine. Thank you so much!!!
love, Julia

Monday, March 17, 2003 7:47 PM CST

Will leave Becca's entry as it is so good!! Thank you for doing it! All good here, and Julia may do the next entry, so be prepared.!! Vic back at school, and I thought I was out of cups, but found them all dirty in his room, can you believe it? It is awful with them both gone, and takes days for me to get used to it, is soo quiet here. However, Julia has been singing tonight so that is some noise at least! Will see if her entry gets here, and keep in touch. Love ma

Hi y'all, its Becca. Got back to school today and barely made it to my first and only class of the day at 2:30. But I did and it was spanish and I am terrible at spanish. We had a great spring break. I had so much fun in Florida with mamajayne and popop, it was really so good to be with them and spend time with them and I really hope to go back soon. They showed me pictures of all of us when we wre babies. they had tons of me and julia, and they are all so cute. I really wish they had been closer when Lizzie and Vic were babies so they could know them as well as I do. I also went to Savannah with my roomates and some high shool friends. It was totally amazing:)
I was reading mom's entry about last April. Wow what a week. My midterms were the same week as Lizzie's MRI so I was studying all week so hard. Things were going so well, except for the fact that mom had not called all week to see how things were and I must admit I was pretty mad at her for that, not like her at all, we talk all the time normally. Well the night before my dreaded Chemistry exam I was studying about radiation, I got this terrible feeling that Lizzie's MRI was not clear, so I called home at like 11 pm to ask. Julia said she didn't know if it was clear, they hadnt heard yet. I was so mad at her for not knowing. So i called back again to get her to ask mom. Again, she denied it all. I now am glad that I did not know what was going on at home, I did have the feeling that night, but mom wouldnt let anyone tell me. So anyways, I got a B on my chemistry exam and I successfully passsed my EMT test, which I will never ever pursue after a bad bad experience with my first patient on the ambulance, but we won't get into that. So the exams all went well and I packed my dorm room up by myself and had everything waiting for them when they came. As always i was so excited to see them, especially Lizzie who always runs and gives me a huge hug and calls my name in her high pitched excited voice. Mom and dad were perfetly calm, they did a great job at not letting on that anything was wrong. My RA even made a comment about how excied and happy she was when she saw Lizzie, the first time she met her she had her feeding tube in, was bald and tiny tiny, could barely walk or even talk. So we get in the car and Mom says "well Becca, Lizzie's MRI was not totally clear this time". At this moment my heart dropped, a well known but forgotten feeling came over me, the worst feeling i have ever felt. I again felt completly helpless. I did not care about anything that had happened that week, it was all ruined. I cried the whole way home non stop uncontrollably. It was horrible, and all the time Lizzie was sitting in the back just talking away and being her happy little self. The only commment she made about it was all was to "please can we just forget it for a little while?" Oh she is so precious and strong. I tried my best to be happy with her and help her forget it but as everyone knows that is impossible. Mom and Dad are so strong and without their support and ever positive attitudes I know we all would have had a much worse time. I planned to cancel my plas for Nags Head that summer, but everything turned out so perfectly. Mom and Lizzie would be in Memphis at Ronald McDonald all summer, most of the time with visitors and luckily with the best of friends down there with them, Seth, Anita and all the new friends they met who they now love so much. Dad and Julia and Vic stayed at home. It was a good summer. The radiation was SSSSSSOOOOO much easier on her than chemotherapy. Obviously we are all so grateful for that. I went to visit her in Memphis and it was great. Mom later called me when i was lying out on my grandparents deck at Nags Head to tell me that her MRI was clear and they were comming home soon! We were all ecstatic and couldn't wait for her to come home. Well, I have rambled on forever. But Mom's entry got me thinking. She is so nervous about her next MRI, understandable, but we all knwo it will be clear and she will be fine. Keep praying for her and all the children. I am off to shower now (surprise surprise right dad:) Love to everyone! Happy St Patty's Day! becca

Friday, March 14, 2003 9:26 AM CST

We have all been so busy with everyone at home!! Vic has been sleeping late and we love having him here. His room is a mess and I love it. Piles of clean clothes all over, waiting for him to take them back to school, and loads of outgrown things upstairs to give away! Becca is back from Fla. and had the most fun, she and Mama Jayne are so alike, they had a blast.! Her hair looks great where she had it streaked and she is very tan. She left today for Savannah, with a pile of friends in my suburban, tv hooked up and ready for the drive to the big St. Pat. day party. She is a fun mess. Julia doing great and got a beautiful report card, she is having a good year. We need to go look at ECU, so she can decide. I like the idea of U. SC but it is far from me, and that is going to be hard. Also, Becca and Lizzie are changing rooms next year, not Julia.

All going well. Liz goes today with Mrs. Fulgham to the survivors reception for the ACS daffodil day. They are the best of friends,and having them connect to our back yard is the greatest thing. Liz still runs over there daily when she gets home..it is good to see. I remember Liz walking to her house after her last chemo, on her little walker, when the fungus did such damage to her muscles and body. That was the first distance Liz went on the thing, after that terrible 8 weeks in CHKD so sick. It is friends like the Fulghams that got us through all this, and the tears we share that keep us going. Took me a couple of days to get the strength to go over after relapse and tell Nancy Ann, what an awful day. Was a year ago April, and it took her Dr. 3 days to call me with the scan results....what a jerk he was then. Called while I was driving in the car, if you can imagine to tell me Liz's cancer was back...who trains these people??? Not just driving but in the carpool line at school picking her up from 2nd grade....would you ever do that to anyone/???? Then had to go 20 minutes to get Vic and Lizzie all the time sitting beside me in the car wondering what was going on. The first plan was to go to NY to talk to Jonathan Finlay, the oncol. at NYU, but he is very into stem cell transplant and high dose chemo, and I immediately said we would not do that. They then said there was another, Dr. Jeff Allen, and I told them to get in touch with his office. So, after sending films to Hopkins and rescanning in 3 weeks, we were off to NYC and then Dr. Allen mentioned Dr. Merchant and the rest is history. We knew we were at the right place at Beth Israel when a clown met us off the elevator and followed us to the waiting room, and then Dr. Allen came in and said"who is Lizzie," she jumped up and said me, and he took her off to the playroom to meet Mya Manley, the playroom volunteer and also the founder of the vol. program there. Mya asked about Liz and what type of BT she has, and then said, "My daughter who is 27 had a germinoma when she was 11, Dr. Allen cured her and she is now married and out of college." Were we supposed to be there???? You tell us. Of course. Dr. Allen laid it all out for us, the radiaition percentages, and the fact that the protocol that Liz had been on was not working well and that it had all been published and we"should have known". I have felt guilty about not knowing for a long time, but now think he meant our Dr.s should have had the intelligence and interest to follow up on the published results of the study,and let us know. Somehow, between Hopkins and CHKD, we were not told.....Personally I think Hopkins had let someone at KD know we needed radiation but it was not followed up on. oh well, Dr. Allen was a Godsend. He called several places for us and showed us the scans, and also called Memphis for us. It is important to say though, that without the help of Pete Decker, of Norfolk, VA, we would not have been admitted to St.Jude. Liz did not fit into a protocol, and without an open protocol, Tom Merchant could not take her. Pete Decker, wihout ever even meeting us, called the ALSAC director and got us in over the phone with one phone call. Then, Tom emailed us and said we had pushed the right buttons and Liz would come in a week.....so if you ever need to get something done never stop until you can find someone to help you do it.

Anyway, relapse shook us all up big time, and now, we are waiting her next set of scans in 2 weeks. Jay is not worried as he knows they will be fine, but I am always upset until I know. Dr. Merchant is great about telling us, and last time read it while she was in the machine, as I was waiting and just falling apart. He is confident and keeps telling us to relax, but I dont think I can. The bag of tricks after radiation is running empty, and we would have to do high dose chemo, which really doesnt work for germinoma BT....Lance Armstrong had germinoma, and the chemo worked for him, but Dr. Merchant says it is different in the brain for some reason.. He is adamant about these tumors being curable with the proper radiaition, and it sets him off when current thought runs to low dose chemo and lower dose radiation....these tumors are over 80% curable with the correct radiation....and Tom has treated several relapsed ones and been successful every time. So, in short, get us through this next scan, with clear scans, and we will feel much better. The quality at St. Jude is very much the top, and we are lucky to be there. We thank God daily, constantly for getting us directed there, and hope my feeling that we were sent there for a reason proves to be correct. I feel Liz and all of us were directed there, and in the future we will be guided to do what God needs us to do, with Liz here to do it as well. I refuse to even let my mind consider any alternative, though it is always there. I am forcing the negative out of my mind as it is too destructive. So, long note that was to be short., didnt mean to go off on a long thing, but the positive approach is very important. We must keep the negative out of our minds.! Just set up a wall and dont let it in!!!

In brief, all is good. Liz doing well and we all are. Is finally getting warmer here, and that is good. Flowers are coming out, and we have our greenhouse of little tomatoes coming up to plant in about 1 month....maybe this summer we will be here to pick some, and finally have our summer relaxing. Seems like it has been a while and I can tell Liz is needing the down time.

Hope you are all doing well. Please sign in and let us hear from you. Is very interesting that Vic's friend at school's aunt has written, and her sister and her son have the same Neurosurgeon at Hopkins that Liz had...Jon Weingart. What a small world. Hope we get to meet them at Parents weekend in April. Best to all, ma

Sunday, March 9, 2003 4:49 PM CST

will briefly update...not much news. Had a great break, and so glad to have Vic at home. He loves school, is well adjusted, doing great, and working hard. We are sorting out missing him and as long as he loves it, that is great...is good to have him home and hear his music blasting upstairs and see his DIRTY CLOTHES all over our floor. We love having him home, and Liz and Julia must readjust to having a boy upstairs!!!!

Becca and Julia are officially going to exchange rooms next summer, this summer actually. Becca and Julia picked their rooms out the day we bought the house, I was in the hosp. having gall bladder sugery and they knocked on the door and Sally Smith gave them a tour and let them pick their rooms out upstairs. However, Vic has the cool room over the kitchen that was the old house keeper room, and Liz has a very pretty room but small and no bath....so She and Becca will switch as Becca is not home as often. They will pick out new colors and stuff and we will do it this summer.

Sounds like we are planning things....not really. I have a real thing about plans, as they seem to jinx us, along with getting to relaxed and settled feeling. We are planning our make a wish trip, and that is all. 2 years ago I bought 2 new bathing suits, and they still have the tags on them...so maybe they will be worn, and we will have a fun summer in some sun it that is what works....and we pray constantly for that. Other parents and families with similar things going on know about praying constantly for the day....

Becca is in Fla., and visiting Jayne and Jim....she is wearing shorts, and having fun we know. She is such a good girl, with her pink cast on her arm!! We are planning to go to Fla. for Jayne and Jim's 60 anniversary next fall, who ever can go. It will be fun and special.

Need to run get dinner for Bible study, at 7. We are trying out a new electronic piano in Church, and it is beautiful!!! and sounds like 100 different things at once.! Keep in touch and hello to the Carrs, our friends at Church that I noticed had signed the book, they are very special friends. Love ma

Friday, March 7, 2003 3:18 PM CST

Well, had a busy clinic day!! Actually busy everywhere, as Becca had to get her arm in the cast, Jay off to get Vic who is coming home for break, and Liz had labs and her derm appt.. The labs finally came back looking more normal, and we can watch and not worry about the kidneys so much..think all the weird labs were a virus she had. The derm. checked her over and she will see her yearly, and we will always have to be very careful of her and her skin , as she has lots of moles and needs to avoid sun. Well, that has been no problem lately!!! So, labs are better and dermatology is fine. Vic is on his way home, and Becca and Julia are off together. All is great, at least today and right here.!
Hope you are all well, and let us hear from you! Love ma

also Monday March 3Sunday, March 2, 2003 6:05 PM CST

Will just add to Beccas as I am so proud she did the update! Thanks Becca so much, it is great to read your note, and hear from someone else. We had a good trip to Williamsburg, and a wonderful dinner at the Trellis, good food and great waitress. Was fun to be out of town even though not far. Liz found a couple of cute dresses and a hat, and shoes. Julai and I searched all the outlets and found a little, but not like I hoped Julia would find....just not much she loved. So, will look somemore this summer! Did find some polo tee's and a couple of dresses, and I always find some kitchen stuff.! Had fun, and will take the rest of the week easy and hope Julia not too bored. I used to love break as a time to read and recharge, but kids now see it as time to take wonderful trips to the islands,etc. We just never have, guess from always having kids in different school systems....oh well, it would be fun but not for us..will find out if we really missed much later, but with split weeks would be hard to take one or 2 and leave the rest...also very expensive with 6 of us to go too far!

All good here. Let us hear from you. Mom and dad home from Fla. safely and we are eating fresh oranges, and yes, there is a difference in the ones we but and the fresh ones. They look great, tan and rested and mom told me I look tired.......must need a hair cut!!! and a touch up on the grey roots! Will call Changes tomorrow to get my miracle! Is good to have them back in town, Julia fixed the non message getting phone, and all is well. check in the book for us, thanks... ma


hi y'all, mom and julia and lizzie are out for their "girl's night out" in williamsburg while i am sitting here trying to get some work done which i have not been too pruductive with lately. cant type too fast either since i broke my stupid wrist snowboarding, and the sad thing is i wasn't even doing anything cool! well mom said her visit with the Patel's went well. they are the strongest family as all family's we have met through lizzie are. i definetly found out this year that the health science profession is not for me. i almost passed out in the emergency room just from hearing some guy scream (broken foot). but yeah, that stuff is defintly not my specialty, sad, even lizzie jokes on me for it. my prayers are with seth and anita. i was terribly sad to hear their news but i know one day they will be the best parents, they are such awesome people! im going to read now. sorry this was not too interesting. just got off the phone with mom and all, they asked me if i wanted to talk to lizzie and before i could respond she did for me with "of course she does, how could she not want to talk to me?!" haha what a brat:) have a nice night y'all. my prayers are with everyone! i love you all! becca

Saturday, March 1, 2003 7:24 PM CST

Things here are so good right now.! Yes, we miss Vic and Becca trememdously, but they are coming home soon. The others are out on Break, and the school issue is getting resolved due to Nancy Webb and Mrs. Mullins working and sticking up for Liz....now, of course, Liz knows she will have to eventually choose between being the special one that can go to Nancy's office and the one that fits in with her friends....however, now she is not ready and that is ok too. She is brave and we are nearly there. If the scans stay clear, we are going to be fine.

Nachiket's family came over. His brother, Syrab, and his mom. Now, Nachiket died just after Christmas of a glioma BT,. a real aggressive sort that really has no treatment. The family is Indian, Hindu, and had moved away for the husbands work, he is/was a Dr., and then when the diagnosis came, they moved here as that is what Nachiket wanted. Anyway, the Dad was killed last summer driving home from his commute one week before his job changed to this area. and Nachiket did so well, but very few win with gliomas....he will be the valedictorian of Julias class, was brilliant. To be short, I wrote a note and just briefly said that Julia was a classmate, and Lizzie had been treated and etc. that I knew some of the stress but not really...they called me to visit, coming here, and wanted to know how is Lizzie, how are we, and what could they do ....In lfe, we are constantly amazed at the giving of others. This family gave me a gift that I cant imagine, asking how are we., and coming out of concern for us. Not often I allow myself to be on the recieving end., and we will take Liz to meet them as they asked. What strength they have. Their visit has been such a gift and it is not often I allow that....as Pat says, learning how to let others give and share is something I could work on...but, it is very hard. Mrs. Patel is now alone with her oldest son, who is going to look after her and is one of the nicest young men I have ever met....very smart, finishing U.VA early and taking his classes this last semester at home but going for the exams...(he is terribly smart)..what a brave family. These brain tumors are so terrible. We are so lucky to have one that can be cured with radiation, and we need all prayers to contunue that Dr. Merchant is right. He is confident. Things could have been so different with her location, and we have been so blessed.

Becca called last night in big tears, fell on the slopes and broke her wrist. Spent hours in the ER and many calls and is in a cast and coming home this week. She did a beautiful job of getting copies of everything and also overnighted it here to Dr. Holden to look at, and he will call and tell us what to do...she is brave and I nearly drove up last night, was so odd not to be there with her in the ER....that is one place I know so much about...She hurts and I want her home. Spencer took her back down the mountain and she did not cry until he let the other rider out, then big tears all over....Poor Spencer had no idea what to do!! but Brittany took her to the ER and she will be fine, but...

We go tomorrow to Williamsburg for the night, just the girls to have dinner at the Trellis and shop on Mon....just a way to get away for a night with Julia and LIzzie...something to do but sit!! My parents get home from Fla. on Sun and they will be upset if we are not here, but will see them on Mon. They have been very good about calling to see that all is fine. 2 years ago, they had to cancel their trip to Fla as Liz was diagnosed, and being gone is hard for them. They did not miss one day visitiing, coming to the hosp during the best and the worst...Pap would come and take a nap often, and their support has been wonderful. This has to be hard on grandparents and I know there were times I would have liked to protect them a bit. May have been easier for Jays being so far away, but then they knew less and who knows.....we just muddled on and thank God constantly that things are good now. Becca is going to Fla. on the weekend of her break, to see mama Jayne and Poppop.

Not real news. Need Vic to CALL US, I miss him terribly. He is one of the best kids I know, and his contract came this week for next year, and while I know he loves it, we hate having him gone. Cant wait to get him Fri. Liz has Friday clinic, and a dermitologist appt. for her birthmark on her leg, they want it off, and we will see. Also rechecking some labs that are not right yet, no real concern but I want to follow up on them all. One day, her labs may be normal, ???? but I dont know when. She is one tough little skinny thing....as Dr. Allen in NYC wrote in his consult, Liz is short and skinny...what medical terms!! She wont always be that way!!!

Love to you all, and sign the book. Marge, soo good to hear from you and have a wonderful cruise! What a great idea.....ma

Wednesday, February 26, 2003 7:00 PM CST

Well, we have another rainy day! and cold again too. This is a long winter, so I bought a sunlite....the 10,000 lux lights you use for seasonal depression. We use it for a computer light and turn it up for 20 minutes per day, and it should help with the winter blues.!!

Well, we have news....of a sort! Today Liz had her oral report on her biography, and she did fine. However, during a couple of her friends reports, she was giggling and it got so "bad" that she had to stay in for 1/2 of PE and talk to Mrs. Harrell, the school Counselor!!!!!!!!!!!!!!!!!!!!!!!!!!!! Frankly, I am thrilled that she is doing such a 3rd grade thing, and it shows that while she may be having trouble adjusting to being in class full time, at least she is there to make trouble!!! I hate to admit to being glad she is doing this, as it is things most of my kids have done...get demerits, stay after school, be a 1/2 dirty dozen. While she needs of course to learn to behave, I am thrilled she is also being 10. Progress is made!!!

Vic is playing on the varsity lacrosse team this Sat, so while he thinks it is fun, I hope he is fast!!! Becca is good, and Julia out with friends as her exams are finished and she is on spring break!!!

Keep in touch, and love to all. ma

Tuesday, February 25, 2003 7:11 PM CST

Good to hear from Anita and Seth, and glad they like the new pics, as they are in them!! Is of the Ron./Mcdon house, where we spent the summer. We had some great experiences there, and I relearned how to live communally...with shared kitchen and all. My kitchen mate was a cajun lady from deep Louisiana, and her son, and we did love to watch her cook!! Goodness, they things they made, and how she and Jarvis could eat.! She made her own sausage and used spices I had never seen. Her husband cooks on a oil rig, so you can imagine what he fixed when he came. Jarvis has a brain tumor too, or BT in our shortened terms....a glioma, which is not a very good one...however he did go home and is doing ok..last we were there he had a scare but scans were still stable. Liz and I lived in one small room, and we fixed it up like home, and did just fine. The lodging is really very nice, and was good to be with lots of other families ....that is where we met all the wonderful friends we will always hold on to, and knowing them changed our lives. Anita talks about going through things that strengthen us, and many of us surely have. The lessons we all learn from these things form us for life later, and it will be interesting to see where we go with it all. Please remember me tomorrow when Nachiket's mom comes over, I have no idea what she wants other than a courtesy call, which I should have made to her, but it is so difficult to visit and I had not really met her, so I did not go...should have, and will see what tomorrow brings. Too much to think about that I am running from, so now, I must face what to say. Will see.
I know all are saying prayers for Anita and Seth, and they are family and very strong. I need prayers for Lizzie's close friend Pat too, and hope she does not get upset I say this here. She and Liz have a remarkable thing and they truly love each other and it is very special. I know that when Liz gets older, as Julia feels like she could now, Liz will be free to go to Pat with what she cannot bring to me. Anyway Pat is having some surgery next month, a reconstruction, and I would love her to be in all prayers..She is very strong but we all need support, and she is very special to us. So, include her along with Anita and Seth please.
No other news. Am lining up tutors for Vic to help him along, and the girls have spring break next week, and we expect snow tomorrow...some break!!
Thank you Lyle, for the picture change, and Jay will learn how to do it soon....he is back from his ski trip, and then also his trip to Tenn in the small plane with Rich Holden and Bill....a little 4 seater, but Rich was a Vietnam pilot so is really good and safe. They had a major tailwind ahead of this storm front and got home in 1 1/2 hours less than going out !!! Does not sound like fun to me, but Jay liked it ok and had fun with Rich's mom, who is 89 and waiting for her new knees to heal so she can resume tournament tennis!!
Love to all, ma

Monday, February 24, 2003 9:00 PM CST

Not long tonight, as am tired. Jay safely home and off again to Tenn. on a small plane on business... not a fan of those little planes either! Had good ski trip and all is well.

Had note today from Liz's teacher, our old friend Wendy Spain, whose wedding my kids were in when she and Shea, our next door neighbor got married! For the rest of the year, Liz will get no grades, but corrections on her papers. She will have all her papers sent home at the end of the week and I will keep them so we can review them all and be sure she is catching up....In this way her learning will be formative, and not putative....as U.VA puts it!! This will ensure that Liz continues to learn, and is not discouraged. We all feel, and her testing shows that she should catch up and do ok...she may have long lasting deficits from what has been done to her brain, but who wouldnt. We are terribly lucky and will deal with what comes, just had to find a way to get finished with 3rd grade, learn what we can, keep the rest to learn later and feel good, catch up and for the first time in 3 school years, be at school all day. When you consider where she has come from, she is doing great, and it is unfair to expect her to automatically be up with the rest of the class who have been well. However, I can promise you the child knows more than most, and more about life than most of us adults...so, we have made pleasant progress, and have much thanks to her teacher, Wendy and to Mrs. Mullins, who is so good to work with and does not mind phone calls from me, when I dont know what I want but know I want my child protected. She is more protective if possible.!! I have tried to keep Nancy Webb out of the middle of things as this may be akward for her, as the ties are too close...I do try not to ask too much.

Got a curious call from Nachikets' brother, the very smart and loved young man in Julias class that died recently from a brain stem Glioma, a very aggressive BT that is hard to treat. He was valiant, and his entire class rallied. I did write his mom, who is Hindu and lost her husband last summer as well, a short note and she is coming over this week. I have no idea why but did not ask and will welcome her. It is a small sorority here of BT parents and I cannot imagine her loneliness, missing him and her husband all within 6 months. I dont know what she wants but am here, and that is about all. The least we do for each other is be there, and I will see. Julia did say she hoped I cleaned the house before they come,......sweet little thing!!

no real news. Am pleased about the school decision and like U.VA said, if Lizzie is a Sr. and does not know what an isoceles triangle is, noone will point to her 3rd grade teacher ....now, I hope Wendy can feel less pressure to do the right thing for Liz, under intense scrutiny, and with out any guideline as we are the first and hopefully the last to have this happen in the lower school. Wendy can feel good, the other night Lizzie and I talked about the goals we had set earlier in the year....which were, and she remembers and said them.....to be in school full time, and to feel good, and to make friends. Then, she smiled and said"I think I have done that too"....to make friends is such a gift for us all.

need to run, is enough. I do know one thing Mrs. Patel and I will do for sure, no matter what she wants to come to talk about, is cry...I can promise you that cancer parents do lots of that with each other!!! Good night, and thanks for signing so we know you are out there!

Sunday, February 23, 2003 8:30 PM CST

Just a fast update...had the best visit with Vic and he looks so good and loves his school so much. He has really matured a lot and I am terribly proud of him all the time. His coat was too small, and the cd player did not work so we found a radio shack and got a good one that did work, and I will return the broken one. He took his time and we visited, it was a great trip...now, I miss him, as usual. His break is in 2 weeks and that will be good to have him upstairs being loud and messy.
Did Liz's bookreport on the 1st woman dr, and that was a good book her teacher chose for her. Not only did all the schools but one reject her, she later lost one eye, and still went right on. Said her best quality was being stubborn, which we surely know about in our house, and is probably what helped Liz and all of us survive! She does love school, and we are prob. going to an ungraded system of tests, where she gets them back marked and we will keep them and be sure that it is retaught to her...she is retraining her brain for all this and it will take time and much patience, and we, I have the patience and pray for the time.
Jay on his way home from skiing and Julia here with me, and is good company. She is having a great year, and we are glad. Lacrosse is fun and she really likes it, so we are pleased that decision worked out well. Often you dont know until it just works.
No news. Becca great at school and will be home in 2 weeks for her break. Will be good to see her too, and she is liking school lots now and also her English major rather than Health Science. That was a good change too.
Will run and clean up. Went to Church and sat with Mrs. Carr, whose husband died last fall...she and Liz really connect and they always tell each other they love each other before leaving ...it is very special and what a gift we all have, to be able to do that. Her husband was on property and he and I spent hours painting and redoing things, and he was my friend, so it is nice to sit with her as she is lonely..our Church family has been so important these years, and are very loving and wonderful. The lady that just finished her chemo last fall and Liz always compare hair and hair growth, and the Church support of my kids was constant. Our minister has never been comfortable with her illlness and has not connected, but I do know he prays for her healing. One day, hopefully he will learn that belief in her healing would have been the most valuable, but that will come. He is a newer minister and finds some of this difficult, and hopefully will find the positive thought needed to minister to sick one day. Someone who does not believe that you will get well carry with them a negative energy that you can feel, it is amazing. We learn to avoid those people, and I have had to learn to overlook it with him. Now that I can, I find I can poss. teach him about these things. I could not let him in Liz's room many days at KD, as I could feel his lack of faith that she would live, and it took the energy out of the room!!...Now, things are better and I find it is because I learned to make the effort too, so maybe I should have long ago.
Good to hear from Marge, in Texas, my aunt....she is tiny, but we call her large marge, for some reason. I tell Liz she will be like her, full of constant movement and energy and teeny tiny.....Liz is thrilled to hear those tales, about Marge and of course my grandmother Boo. Keep checking in and sign the book so we can know you are there. it makes these entries worth it! Love to all, ma

Friday, February 21, 2003 8:34 PM CST

Not much to add. Anita called and she is doing ok, and they have no reason not to wait and try again for a house of little ones. They are truly such special people and it will happen....I cannot imagine our lives without them , and know many others feel the same way. Noone could be better future parents, as they are so loved now.

Vic is 15 today and we are not there, is really hard. One day, all will be perfect, do you think??? I often really doubt that day will ever be, but I find such perfection here each day that we are amazed and so gifted. It is hard to describe the beauty of living with the gift of knowledge of how special it all is. Every time I see one of my family, I am happy. To have been given the knowledge that this instant matters is the greatest thing we could have right now. Do not waste a moment if you can help it. Live with few regrets and always try to look for what must be the right and God given path... Nancy Noyes and I are both feeling some of the winter downs, and i tell her that the sink is normal life after chemo ends, as then the time of living with it all and waiting begins. It is such an up and down thing and all you really have is lots of faith and today...so, today must be wonderful if you can make it be. I wish all my friends could know that they are not promised tomorrow and to go for it now. The fear and joy combine..

Need to run, the IM thing is bouncing and I think it is Vic at school...I sent lots of pizza to them and we go tomorrow to see him. I cant wait. Becca is at Va. Tech visiting and Julia is here doing an art project. She has volunteered to learn how to give the GH shots, so that is a big help. out of a poss. low of 10 meaning you really need and insurance will gladly pay for Growth hormone, Liz had a total score of 1..6, which means she is nearly totally GH deficient.Tom Merchant had guessed she would be about a 1, so he was right on target. God keep that man healthy!! Bless you all, ma

Wednesday, February 19, 2003 7:00 PM CST

Well, today was a full day. Liz had dancing and loves her club. This was the last day of it, so think she will sign up for the art club next week.....I will definately put her in dance next year as she blossomed. Julia began Lacrosse, and what a relief from SOFTBALL which we loved at one time, but it turned out to be a total bomb....we actually let her quit last year, after she had played beautifully since she was little....just a real personality conflict and why do something totally negative....also found out the coach had it in for her over somethng that happened when Becca was there, and she thought I had been involved...the spring Liz had surgery and chemo, right as if I cared about her back then!! Julia stuck it out and now, will have fun doing something good with a classy team.

However, I do have a big request and also some bad news. Seth called this afternoon to tell us Anita lost the baby today, and they are of course very upset. Anita is ok, and we know they are strong and will be ok, and will eventually have a wonderful child to bring home, but this is very sad and they need our thoughts and many prayers. They will be the most wonderful parents there ever were, as they have soo much love to give, and I cannot ever say how much good they have done for my family. To be so far and not be able to just drop by is very hard. Lots of tears here this afternoon, as I am sure there are there too. Anita has her parents right close by, and that helps a bit I am sure...but please keep them close as they are our wonderful extended family and we miss them terribly. I will keep you updated and will call her soon, but not tomorrow. As I have said here many times, things happen that I do not feel God wanted to happen, and I can find no explanation for...I know God wants them to be happy with a beautiful child, and that will come for them in a bit....we just wish it was right now. One thing we learn on this trip is that we may as well stop asking why, and just keep on going....good will come, that we are sure of. Often, it falls on us when we dont expect it. so maybe it is coming again soon. They have meant so much to us, and we want the best for them. So, keep them in your prayers.
No other news. Vic is 15 this week and we cannot wait to go there and see him. Becca is good, and Jay is off out west skiing...hope he has fun too, and I am cleaning out files!!!
Love to you all. ma

Monday, February 17, 2003 3:21 PM CST

Just came home from long Neuro/Onc. clinic at KD, our local great Childrens hosp. Our N/O nurse, Amy is so organized and in control, and it all runs quite smoothly. We were so focused on getting lunch on the way that we forgot Emla, the cream that numbs your skin so Liz can easily get stuck for labs.....lunch was a big deal today!! So, those who know, know we use the emla and rather than the big sticky pad with it, we cover it with saran wrap, the favorite color being red and then scotch tape, which makes it very airtight but not stuck. Liz tolerates no tape!! So, instead we got very creative with a purple glove on her arm wrapped around and taped....worked great!

Neuro clinic is the long one, where we see Neuro/surgery, Neurology, Endocrine, Dr. Bevan, and should have been seeing Rehab but did not. The tapes of the scans were "on Dr. Bevans desk", which sent "looks " around the room, as his desk is about like Vics bedroom, and !!!!!. We did find them, and though I really had no need, Dr. Pennix and DeLustro checked them out and both agree that they look fine. Though I KNEW and Tom Merchant had told us, any saying it again is great. After relapse, everything changes and if I hear it week to week I am happy. Guess that is why Dr. Merchant emails us too, he knows the followup is good.
Dr. Satin-Smith, Endocrine is the one we will depend on the most, and she is good. We are watching some labs that are not perfect, and also will begin growth hormone soon....she is crucial in Liz's life as all her hormones will need replaceing. We think she is great, and she is too busy, so this clinic is a good one to see her in....All is going fine, and Liz will always need a good endo. Dr. to follow her closely. Dr. Merchant also is very good in this area, so between the 2, I am comfortable.
We also saw Dr. Lewis, Neuro. who last saw us last Feb, a year ago. He is very good, and her vision fascinates him, as there is no telling what it may do to get better...he tested her reading vision at 20/40 and 20/80 or so......now, she cannot see perferally or sides, but her vision in the direct middle of the eye is better than we ever thought it may be.....she compensates so well. Her other neuro signs are perfect and we discussed that we are simply blessed and terribly lucky that she is doing so well. There are unlimited deficits she could have, and she does not.
Dr. Bevan was cheerful and Liz told him he looked like Mr. Rogers in his sweater. better than last week when she said that 50 was terribly old....after he told her about his upcoming birthday....such a tactful child!!
So, a good day and all who read this please say a prayer of thanks for it all. We are totally blessed and lucky. We have such a gift, and it is so important to know that. For all the things to have been done to her brain, it amazes us that she is so good. The list of what "could" have happened is endless....Constant prayer is the only way to deal with our being so Blessed, and then I still cannot understand why we are so fortunate and not everyone....the list of children that dont make it is growing so every day. It is too much to understand, but we own a terrible amount back for what we are given. Liz understands this, and there are days I find it hard to deal with the whole idea. My family and our friends know what we have, and any parent of a cancer child does too.. These clinics are great but so upsetting when we realize what could have been, and how fortunate we are to have had the sense to look for and afford the best.....Never stop fighting for the best in care and treatment. There are clear differences in facilities abilities to handle different things....especially the complicated illnesses. The best thing you can sometimes get is a referral to someone else. Always look for the tops.

will run now. Long day, and tomorrow is a field trip for Liz. Julia still at Wintergreen skiing, in the hudge amount of snow she got, and Becca as well at school and snowboarding with friends at Massanutten. Vic we miss terribly, and hope he calls. He is 15 this week, can you believe it. Jay goes out west this Wed. skiing, and I am here, and will have a break while the girls eat out!! Let us hear from you. Keep Anita and Seth in your prayers, as they begin the months of waiting for the first child, and Liz is totally wild about it all!!! Love ma

Saturday, February 15, 2003 4:53 PM CST

thanks Lyle for the music, it is perfect~! Love to you all...ma

WE HAVE WONDERFUL NEWS.!!!! REMEMBER OUR FRIENDS, SETH AND ANITA, THAT WERE SO CLOSE AND STILL ARE TO US, MOVED TO MEMPHIS IN FEB OF LAST YEAR, ONLY TO FIND THAT WE WERE GOING TO FOLLOW THEM THERE!!!

YES, YOU GUESSED IT, SHE IS EXPECTING AND IT IS SO EXCITING..... LATE SUMMER IT SOUNDS LIKE....WHAT FUN! (notice the page colors)

No other news here. Liz let our bird go outside by accident, he loved her so and used to fly around the house after her, then just flew out the back door!! We tried to find him but birds are hard to catch, and we did not clip his wings so he is gone. Oh well, he was the perfect pet, and I am very sorry.

Jay and Liz up to see Vic today,and Jay and all of us miss him so much. He loves school...and we would love to have him back here. Oh well. Julia off skiing at Wintergreen, and hates the cold. Becca fine at school and Jay making our countertops and getting ready to tear up our kitchen!! are you ready for that. Will let all know that I did meet with the school principal, mrs. Mullins, and of course Liz's aunt Nancy is the asst. Principal, however dont like to put her in the middle. Just want to be sure we are all on the same page about catching up with all Liz has missed...we cannot compare her to the other kids, and can only go by her progress. Mrs. Mullins totally supports us and agrees and feels if anything Wendy S., as I know is doing a wonderful job, and is poss. too concerned about liz catching up. I cannot forget that I have been forced to learn patience by the gallon, and it has been a valuable lesson. Things now happen at our own pace. So, we know Liz will go to 4th grade unless something terrible comes up....and I will just do all the make up we can and then do what we can this summer too. Now, I just need to get Wendy to relax and know we will be just fine...she is an old friend and a good teacher, and we will be ok, at our own pace. Nancy feels and I agree that with all the missed time and the pace of the school that a goal of being all up with the class by 7th grade is a good one!!! I will take it, just get us all to 7th grade, Please God! and we will be thrilled every day of it all. All here is good, and life is good. We are pleased for that. Let is hear from you. Love ma

Thursday, February 13, 2003 9:13 PM CST

Not much today. Still not at school, over 115 out in the lower school, but tomorrow will go in for the Valentine party. Have actually had a fun week with Liz at home and with me. I just love it, but is not the best for her. Was reading about Eleanor Roosevelt, and interesting things about education of women back then.. Good for Liz to read and is not easy for her with her eyes.....,she does not love it and she must learn to ...... nothing is easy for her it seems but she knows no better so on we go.... She also said she does not have a valentine, but likes Anthony, he is not nice, but he is CUTE!!!......are girls funny or what??? I guess like Becca, if he then likes her, she will dump him. Would it be fun to be 10 again? I can see her going fast through the social ages that she has missed, it is happening so quickly as she tries to catch up and go to the age appropriate things.... They must take it step by step, and it is really a good thing to see...the ears pierced was a big step, and then the pre-teen things.. Is a relief that she is doing it. really. She has been so old for so long.

All is good. We say our prayers and name our friends so God can hear their names each night, that is so important. Liz refused to let us take our friend Julane's name off the church Prayer list, even though Julane died at Thanksgiving....she knows her family needs to be there. Julane was my friend, the mom of a friend of Julia and the grandmother of Lizzie's friend Alexandria. I loved her, she was an older mom like me, and we reallly got along well. So, we pray for her each day too. There are so many, and it will be a relief for me I think when Liz's list is short and just a few, and she has moved on a bit.....not sure that will ever come. So much for one so young, and so typical of all these kids with cancer, they are far too wise and love so much. It is great, really. and they learn that pain is a part of knowing you are alive.

Not getting in to this tonight. Jay and I went out for a great Valentine dinner, Julia came up with the idea and it was very nice and fun. Thank you, Jay and Julia, great idea. Keep in touch. Love, ma

Wednesday, February 12, 2003 9:26 PM CST

Not much news tonight, please stop by Taylors page if you get a minute...She is still doing well but Neena is worried about the radiation on top of the 2 transplants....how much can these bodies tolerate?? Neena just needs a word of encouragement....and also as always your prayers.
Liz is fine, home from school as they still have over 120 out of the lower school, the usual absentee list is 30 to 45 or so....so I just cannot send her back to the bugs after all the weekend stuff. They are out 1/2 day Fri. and Mon all day....lucky her has a neuro/onc. clinic scheduled, so her day off is at KD, but things could be much worse!! that is for sure....Hopefully things will be more normal there next week after all get some rest time. Am worried about Nancy Webb though as she looks exhausted, and has all the subs to work out for school as well as filling in for class when she can...
Will run, hope Becca will write a page and wish Vic would as well. Jay could, he just konks out too early at night!! Oh well, we each have our schedules.... Let us hear from you all. Love ma

Tueday, February 11, 2003 6:07 PM CST

Hopefully, someone will update more than I will today as I am tired!! Had that great trip to Maine, and was home Mon, however through the day Liz got more and more not herself, and I stayed in close touch with clinic, finally taking her at the request of Dr. Bevan to the ER and after 8 hours and a sodium level of 121, which instead of DEhydration was dangerously high HYdration,......so we had to stay until the levels went up some...What a mess her DDAVP and fluid control gets when a virus sets in...So, too much fluid and a major change of hydration in such a short time is very upsetting to the ER staff, however Dr. Satin-Smith is in control...We got home at 1:15 am, and today went back to recheck and her levels were coming up nicely. Lizzie's surgery and tumor location caused a lack of control in the hydration center of the brain, and stopping of the hormone vasopressin, which when you become dehydrated or too hydrated, causes you to stop being thirsty She has no natural thirst, and we supplement the hormone daily with a nasal spray, however under stress or virus, etc. it gets out of whack.. We also supplement cortisone to a replacement level, which helps fight infection, illness, etc. So, today and all weekend we replacement dose her cortisone, at 1and 1/2 times her normal dose.....confusing??? to me too, so we are meeting with Dr. Satin-Smith now often to get it all back in control. We see her again Mon. and will begin working again closely. Dr. Merchant is a great radiation/onc. Dr. and Bevan is overseeing her hemoc. but we depend on Dr. Marta to do the endocrine. We are sooo lucky to have her here, as she trained at CHOP. or the childrens hosp in Philadelphia, and is very good. So, on we go. Today Liz is much bettter, and we are glad Dr. Bevan said come in, as I would have done another dose of ddavp and caused her sodium to drop even lower and 121 is a panic level big time. Too low causes seizures, and other rotten things. So, we have learned a lot that we needed to know I am sure.!!!

Julia loved South Carolina and met with the Nursing folks, the director of the dept went to Va. Tech and is happy to have someone from Va. there.....I think she liked it so will be between U. South Car. or East Carolina.....however, USCar. has PALM TREES, which is on her must have list.!!!!!!!!

All is good here. Liz is doing great. and we loved seeing Matt, he looks wonderful and Nancy and Bill could not be better southern style hosts....they are so gracious and we had everything and more than we needed. Jay has pics of the shirts and the new earrings...The trip was so good and seeing Matt and Nancy and the whole great group was so nice. Their home is beautiful and the kids are good, sweet and smart kids. We wish luck to Bryan, as he is joining the army in March to be a fire support specialist, which is bomb sort of fire, not burn down the house fires... Oh well, Life is good and even sitting in the ER or here with everyone, we are glad to be here and together, each day and moment is terribly precious. Let us hear from you all, ma

Let us hear from you all. Love ma

Sunday, February 9, 2003 10:54 PM CST

We are home and have learned we just cannot take a normal trip! We had a wonderful time and seeing Nancy and Bill, and Matt and Allie and Bryan was really great. The fundraiser was a big success because of the cause and also the special goodness and hard work that the Noyes family did. They raised over 13,000, and it was so good to see. Nancy had tee shirts, food, tons of gift certificates to raffle and so much going on. The community there really is rallying around a good cause and later this month Matt will also be on the radio..Maine is absulutely beautiful, and so different from our coast here in Tidewater. It was COLD. but we do have coats in the south and we wore them. However, did you know taht the north will not take confederate money??? The hospitality there is non stop.! The trip and seeing our friends was great. Lizzie and I really found a special bond this summer with this family in Memphis, along with Lyle and Peggy and Steven and Bootsie......and getting to go and see them did us so much good. Matt and Lizzie have found lifelong friends, I guess those brain tumors do that.....they are survivors and we plan on that continuing. However, there was a glitch, and by the way, Nancy is a Nurse Practitioner, which is an advanced degree and she works specifically in seeing, diagnosing and prescribing for psych. drugs etc. for kids....she could have a ball at our house it seems sometimes.! Liz was not herself Fri. but I thought it was just that she had been so excited. Sat. am she was bad, and Nancy wisely insisted we run her to the er, where her labs made the resident jump and after a bit of talking with Dr. Byrd here, and giving some fluids in the er and consulting with a very understanding and super Dr. Molly, in Hem/Onc. there, Liz basically decided and was admitted to the Barbara Bush Childrens Hosp. overnight for fluids. She did have fever Sat. am, but that is all, and while Nancy did see an ear infection, the er Dr. did not....oddly enough, he is going this summer to St. Jude to begin his fellowship there in Hem/Onc, so we got his name and promised to look him up when we all get back,...Anyway, her labs were a mess and the night of fluids was badly needed, and in the am Dr. Molly came up and brought her reallly cute 7yr. old to meet Liz and talk about ear piercing....then Dr.Molly also looked and confirmed that the ear was yucky, and we did get an antibiotic....Yes, Nancy was right all along..also got an iv antibiotic Sat. night, which helped alot. Anyway, we were put in the room right beside Nancy and Bills good friends whose daughter had that terrible accident, and as she is doing better and her grandmother was there, I will admit to leaving Lizzie with Matt and Allie while we ran out for a fast dinner, and a fast Margarita too, ....I must say that the Maine Med center did a beautiful job in dealing with us, and having Dr. Molly right there to talk to and see us was top notch...I think a reg. pediatrician would not have dealt with the funny labs as well...So this am Liz looked better in person and on paper and we got out for a fabulous tour of the area, which I will say is totally gorgeous....and in time to easily make our flight home. Liz is drinking like mad, and tomorrow we will run to Norfolk to let "Herbert" look her over and repeat all the lab work, and hopefully it will be some bug that on the plane went into her ears and then any comprimised kid on ddavp can so quickly dehydrate. She is upstairs now talking to Julia, after calling her Becca . I had a great time, and frankly sleeping in the hosp is so normal that I rested fine....just missed a lot of Maine fun that now we will make up some other trip. Jay has been busy taking Julia to look at schools, and also getting our countertops started....they will be so pretty. So, that is our adventure, and Jay had the honor of learning how to do this entry as well as deleting alllll my email while I was gone.... We talked briefly to Vic and he is fine, has a birthday soon and we will have him home for the weekend. Becca is also well at school and I think getting some more snow. Becca, just to let you know, we did see SNOW and it was fun. Thanks for checking in, and I hope Jay didnt make Nancy Webb too upset, she is of course Lizzies aunt and also school asst. principal, who gets to deal with the sick kids at school. I had kept Liz home the day before we left to avoid any illness, but she just cannot tolerate any drop in fluid intake, and it spins off into dehydration really fast. My biggest concern was that we would take something up to Maine, and we probably did....oh well, so much for plans. Calm down Nancy, .....At some point we need to also tell about the amazing school staff, and Mrs. Sybil and Sybil jr, ,but it is for another week, they have done so much. I know Nancy W. would do it for any child in our situation, but having here there has allowed me to be easy when Liz is in school.. Love to all ma

Saturday, February 8, 2003 9:47 PM CST

MaryAlice and Lizzie are in Portland, Maine visiting Nancy & Bill Noyes and their family - notably Matt whom Lizzie grew close to at St. Judes - so it falls to me to update the page and let you all know what is going on.

First of all, you should know that Lizzie passed up a trip to Disney World she had won to make this trip. Nancy had contacted MA to see if it would be ok for a photo of Lizzie and Matt to be printed on t-shirts for a fund raiser (held yesterday) in Portland. This is a rather unique pair. At the time the photo was taken, Lizzie weighed all of 40 lbs. - Matt weighed 240 and is more than twice her height. Needless to say, this is a classic photo of a very special pair.

MA put the question to Lizzie who said " of course, and I want to go to the benefit - Disney can wait." Knowing her well, I was not surprised, but I have to admit, I am proud of her decision. This little girl is so far beyond where most of us were at 10 years old in terms of maturity (especially us boys), and her wisdom , strength and faith is still in in place many of us have only as goals.

The Lord knows exactly what he is doing in touching these children. In fact, all of our 4 children have shown nothing but positive character throughout this journey. The scriptures tell us that adversity can help us develop perseverance, and perseverance , character, if we choose to be faithful. MA and our children have been examples of this living word to me without exception. I am truly blessed to be a part of this family.

Back to Maine - it is cold up there, but Nancy asured us she has heat - MA confirms this and the fact that the Noyes family is a joy to be with. This is not a surprise - while I have only met Nancy and Matt, these two are the picture of folks who love life, and their outlook is infectious. Cannot wait to meet the rest.

Speaking of infectious - our society is crippled by misplaced priorities. This is not my personal revelation, but a specific example - some of the parents at our local school place such high priority in getting to work, that they naturally take their children with viruses, fevers etc to school and then hoof it off to the job.

Lately, this has been so prevalent a practice that there is sickness of epedemic proportions at our local school (NSA). The lower school headmaster actually had to write a mass letter advising folks not to take their sick kids to school since they would be called at work (or otherwise) to pick them up.

This is embarassing to any thinking person. The local paper highlighted our school and another (which closed for a period) because of the % out.

In any event - Lizzie was exposed to this virus and apparently it took hold yesterday in Portland - she is fine but spending the night in the hospital tonight (w/MA at her side) to be rehydrated. A cynic would take off on this , but we are not, so we will not.

As it so happens, Nancy is an LPN (hope I got that right - a very high level nurse), the hospital is excellent (she is in the Barbara Bush Center), and her Doc is on his way to St. Judes to do a fellowship.

There is no such thing as coincidence - God has wielded the sharpest sword to cut a path through the jungle during our entire journey.

Next door to MA and Liz is a young girl who is a friend of the Noyes family, who apparently sustained a severe head injury some 10 days ago while lowering a basketball goal? I do not know her name, but please pray for her (God will know who you're praying for)

An aside - while MA and Lizzie are in the cold north, Julia and I visited Univ of SC Thurs and Fri, where she has been admitted - she has (like Becca was ) been blessed with acceptances to various schools, and is making an informed decision. I like USC, but do not tell her, it is her choice to make.

My parents set a great example for me - they let me choose schools without pressure (even though they were both of the Crimson Tide), and we are doing the same. Unfortunately none of the kids are interested in Notre Dame (darn, I sure would like football tickets).

Oh, by the way, they raised some $13,000 for St J at the Portland benefit yesterday! Good work Nancy and Bill. And MA and Lizzie have had a wonderful time.

I want to tell Bil Noyes here that it is not fair to raise that kind of money without having to dress up like a woman like I had to last Sat night for a local "Womanless Beauty Pageant" to raise money to fight cancer - next year I will just write a check.

Night all - and may the Lord bless you. JD

Monday, February 3, 2003 7:52 PM CST

Was a great weekend with Vic at home. Julia went up to visit Becca at school and they did have fun together with each other and the other girls that went to visit with Julia. The weather going was terribly foggy and not nice, but Julia rode with Austin and that was better. They also were routed through the mountains as there was a wreck on I-64. So, a rough start but a good visit.

Vic is doing well. His grades wont be his strongest this 6 weeks but he is much more mature and I can see him growing into where he is in life. I am so proud of him everyday. Having him home feels so right, and we do love it. He and Jay hunted Sat. am down in N. Carolina and the boys , Bobby and Vic, got their limit. The ducks are in the garage for Matt;s dad, and we will keep some. Then, Sat night Jay was good enough to be in a womanless beauty pageant, he agreed to do this in a weak moment for the Cancer society relay for life kick off.....so he did a great job, was very appropriate and did just as he needed to to help raise money and then get out the door! Oddly enough, when Vic, Liz and I sat in our seats, the lady behind us leaned over and said" I am so glad to see you here, I am Terry Fairy, the make a wish lady" that we have been talking to on the phone for 1and 1/2 years and had not met! Liz picked her plate up, sat with her and Liz and Terry right then worked out the trip for next summer to the Island of St. John, which is in the British Virgin Islands and is a beautiful game preserve....our entire family goes for the trip, and we will let you know about the date when we are finalized! What fun, and to run into her there, what could be better.
Lizzie and I leave this Thurs for our much awaited trip to Maine to see our wonderful friends Nancy and Matt Noyes. We became close this summer at St.Jude and it is so good to have another family you love and have so much to share with. The stress is just easier with a family that is in the same position in life, of dealing with a long term life illness...and Matt and Lizzie share a wonderful outlook on loving life and what they do. Matt is 20, and about 6ft. 4 and weighs about 240....they are having a St. Jude fund raiser Fri. that we will be there for and the shirts will have Liz and Matt on them....a cute pic. that shows the constrast in Matt and Liz. Anyway, we cant wait. We leave Thurs am. and Julia and Jay go to look at Univ. ofSouth Carolina....Julia has been accepted into the nursing program there and has an interview....that will be fun too. Need to run and get things done. Please sign the book it is so good to hear from you all. This is something my children have loved,and many of their friends are here too. They have been so faithful about loving their sister, and I hope they will fill you in on some of the very special people we have met along the way, they have so many and such good and vivid memories of our wonderful KD nurses, and I hope they will write some of those times. I would like Julia to tell the first time Liz had chemo and we were on our way home, Lizzie fainted in the bathroom and Boo caught her, and then was more upset than anyone!! Our nurse Peggy was soo worried that day about Julia!! Love to all, ma

Friday, January 31, 2003 at 07:15 AM (CST)

Another rainy day here, which is really kind of nice. Vic is home from Christchurch and is so good to know he and the dog Mocha are asleep upstairs in his cozy room. We have missed him this year, it was last winter we decided to let him go to boarding school but after the summer, Liz and I just didnt see him much! We got home 3 days before he left, so have really missed him. Is good to have him here. They go hunting tonight Julia is off to visit Becca, and Liz has company coming over.
Liz got her report card yesterday, and she has dropped a bit in some classes, and her teacher again said"we need to meet"....my first reaction is not really a nice one....these kids go through so much, and her school has been totally supportive.. Her teacher is very nice and an old friend, my kids were in her wedding actually as she married our next door neighbor, however I must say I dont think she really understands where we have "been". I think, with the past 2 years, that for Liz to keep up as well as she has is amazing and she has done well. The whole emotional thing, with a new class, new friends, no hair, etc. is enough, and then, we get to all the possibilities that a brain tumor can cause on these kids.. When I read the sites, I know that we are lucky she is in a regular classroom, regular school, and can do her work. We are lucky that she only has trouble with some nouns, and that she has adjusted so well with her vision. She reads most anything, and I dont know how....one eye is 20/200, the other 20/100 on a good day, and she sees 1/2 of the visual field. She compensates so well for this, that I dont think people realize. To me, what she needs at school is constant encouragement, and if she misses something on a test and the print is tiny, the chance to do it over with the reminder to try your glasses, ..I am of course very protective, but to imply that she is not doing well burns me up....I am talking about a C here, lets be realistic. but still. She has done remarkably well, and I want everyone to know it. .. Oh well, on we go. Didnt even show it to Lizzie, may just ignore the teacher note for now, and have fun today when her friend comes home with her, and they play and watch a movie and do "girl" stuff.

Noticed Jeff from Louisiana signed the book....How are you?? We have kept up and know you are doing well, but is so good to hear from you. Jeff and his family are a good example of meeting over the summer and wishing our paths crossed during checkups back in Memphis..he has wonderful parents and a big family, we miss them in our kitchen!
Have a special, blessed day and appreciate all around you. Life is so good, and there is always much to be Thankful for. ma

Thursday, January 30, 2003 at 08:32 AM (CST)

ok Becca did a good job of updating so be sure you check the history and read her entries.....several of them as she figures out how the site works!!

Lizzie had good clinic trip yesterday, rechecking some labs that Dr. Merchant was not totally comfortable with....she will someday have normal bloodwork but I dont know when....the chemo really did a job on her, and it takes a long time. She was checked by hemotology and endocrine. though, so they are comfortable with the labs and think she looks great. Liz continues with such a postitive attitude and is so cute that she is a pleasure to have in clinic....we saw our old friends and her weight is still good....the big news of the day being we stopped off at McArthur mall and pierced her ears!!!!!! With her short hair, those tiny pink flower earrings look darling! She was too excited and it is sso nice to do normal things, and be happy with them. Like we say, each day is a gift to us. She gets her report card today, and before we even get it, I will say this. My focus this last few weeks has been, for Lizzie, to be 10. She has had some struggles with school, of many different sorts...but overall my main goal has been to see Liz be her age. This is happening, finally, and yesterday she had several friends over and once again we heard them running through the house and getting too loud and actually bothering us....for the first time in several years.!!! Friday, she is having a friend come over from school. They plan on getting a movie. Vic is home and he and Jay will go hunting in Carolina, for Youth day, the last day of the season when only kids can hunt...so we are having girls time. Julia will be up visiting Becca at JMU. These are my goals right now....socially and emotionally rather than the academic. As the older mom in her class, I am unusual, however, who cares???? These are the important things for us right now...that she be her age. The academic will come. The testing at U.Va shows that she will be ok in school. Now, it is time to do little girl things. She has lots of catching up to do. Next week we will begin more of an academic push, but now, we just watch her and are thrilled. As my mom says, she thinks Lizzie is very aware of how sick she was, and has decided to enjoy everything she does....positive atttitude and Faith is everything.!

Be sure to read Beccas journals of yesterday. She has a gift and will be writing here often, I hope. ma

Wednesday, January 29, 2003 at 08:28 PM (CST)

ok...for the 3rd time...i am so sorry...but very happy cause my entry just showed up!!!! yeah!!!!!!! luv and prayers to everyone!!!!! luv becca (for the last time today too i promise)

Wednesday, January 29, 2003 at 08:25 PM (CST)

hey y'all.....its becca....well i just wrote my 2nd VERY long journal entry and for the 2nd time it erased....i am not too happy right now...but i just want everyone to know that i have attempted to write! this thing just doesn't like me right now. i will write later on this week...i love you all....luv becca

Wednesday, January 29, 2003 at 07:44 PM (CST)

Hi, its Becca. I wrote a few days ago, a really long entry and I was so happy with it, but yeah, it definetly got erased as I before I added it. I was not happy. Yesterday I turned 20, and as mom said, it was the 1st b-day I have been away from all of them, but it was still fun. Made me think back to my B-day 2 years ago when we first found out that Lizzie was sick. She was having problems seeing, and we were all joking around with her about getting glasses and all. Wow, i wish it had been that easy, just glasses??!! Mom and Dad and all felt bad cause they didn't want me to have a bad birthday that year and I did not care at all that it was my bday. All I wanted was for Lizzie to be well. Those were definetly the hardest years of my life so far, and I hope they will be the hardest that my family and friends and all have to endure. Lizzie is the strongest little girl I know, stronger than me most definetly! It is impossible to summarize all that has happened these past 2 years, there were so many new events, places, people, and mostly emotions. There are many memories that come back to me at the most random times. The main ones are the first time i saw her at Johns Hopkins after her brain surgery and one day at CHKD. Helen and Kathy and I were walking to her room when I saw mom and dad from a distance, I looked down, and there was Lizzie sitting in a wheel chair in her little flowered khaki hat . As I got closer i saw how swollen and black and bruised the right side of her face was, and she was smiling and so happy to see me. Never in my life have I felt so helpless, shocked and scared as I did then. But of course her little voice saying "Hi Beppa" and her smiling face brought me back to reality and I gave her a hug and we talked all the wy back to her room. I must admit that as soon as we got to the room I made a quick escape to the hall bathroom to have a hysterical breakdown, but mom came to the rescue. I just hadn't prepared myself for what she would look like after the surgery, I had never had to deal with anything like it before in my life! My other memory was when Lizzie had her fungal infection. There were so many weeks that noone, not even the doctors knew what was wrong with her. I never imagined how it would feel when I heard that the doctors could not even figure out what was wrong with her. She just kept getting worse and worse. She couldn't walk, or sit up, or control anything, they even had her on breathing machines. It hurt for anyone to even gently touch any part of her. Well one day after school, I headed over to see her at CHKD, and as soon as I walked in I knew things were not any better, but Lizzie looked up at me and reached out and took my hand and quietly in her innocent little voice said "hi beppa",and yet it seems to be such a simple gesture it seemed to take so much energy and I will always remeber that moment. I can still hear her voice that day as she held my hand. Mom said she had been waiting for me all day. Dad and mom knew all along that things were going to be fine and LIzzie would be better. There were of course times when we were all really scared, but they always reassured us and helped us to keep our faith and grow so much in it. God was my main source of comfort throughout it all, there are so many times that I prayed and talked and cried to him, knowing that he is the one who carried Lizzie through it all. I know everyone that was there with me and my family throughout her sickness hold many different memories of it. I truely don't know what we all would have done without our friend and family's support. Y'all are all the best friends we could ask for and were so great to us throughout it all, from the visits to the cards to the dinners to the calls and so on. Thanks to everyone for all of your love and care. Mom tried at one point to get us to write thank you notes, but as many of you know, we never really came through with that gesture, but i am sure you all know how grateful we are to you. Well, I have defintely rambled on for quite a long time now. There are so many things I could write and I can go on forever, but I think I'll stop here. Lizzie is doing wonderful today and back in school and just perfect. Mom even made a deal with her, 2 baths and week and she'll get 2 massages a month! I don't think I was ever offered that one! She really is one of my best friends and I love her so much. I would have given anything to have traded places with her, truly anything. But she is so strong and positive and has grown into a beautiful girl, and she just got her ears pierced today too!!!! Ok, enough of my writing. I love you all and my best wishes and prayers to Stephen and Matt and Taylor and everyone else who mom and Lizzie are so close to, and I pray for daily. Y'all are all so strong and I want you to know we are always here for you! Matt and Stephen,thanks for being so great to mom and Lizzie in Memphis, I don't know what they would have done without you guys! Love to all......becca

Tuesday, January 28, 2003 at 08:01 AM (CST)

HAPPY BIRTHDAY BECCA!!!! She is off a JMU and we called early this morning to tell her happy birthday....she is 20 today, can you believe it!! So, this is her special day, and the first birthday we have not been with her...which maked us very sad and feels very strange. Becca has class all day until about 4, and her box from Fed. Ex had better be there this afternoon when she gets home or I will be so upset.....we are tracking it !!! and it left Dulles yesterday, how long could it take????

So, lots of love to you,Rebecca Bartlett , our oldest and seems so short a time. Love you lots ma

Monday, January 27, 2003 at 06:41 AM (CST)

Thanks Lyle for the Picture on the front. How about some Dixire Chicks??

Noticed Pat had signed in, and was trying to remember the exact time Liz and Pat began their friendship...Pat is our across the street neightbor, who lives with Wayne, her wonderful husband, and her cute son Kevin. But, no daughter, so, Lizzie is filling in all she can! Pat began to drop by to see us when Liz was home recovering, as I can remember. Liz has always loved to walk around the block, and they occasionally did that when Liz felt well, and than Pat would bring her cute little doggies, and they would walk them too. Over time, they have developed a closeness that is very special, and has been from my place watching nice to see. It really happened so slowly that the details are hard to remember, walks around the block and visits to Pats mom and then Liz began crossing the street to visit..All winter they became close. I think though, what really solidified it all was when Pat was diagnosed with breast cancer, and began her own journey. There is a closeness with cancer patients that while not exclusive, is surely there, as it is so difficult to understand all the emotions involved. Pat had her consults and surgery and then, in the middle of it, Liz relapsed. The day Liz had her spinal MRI, which for some dumb reason we were putting her to sleep for, must have been the lumbar puncture too, Pat had her big surgery the day before. The hospitals are side by side, but is a long walk, and as we went in to wait, not early because we have learned that if they say 7 am we go much later....there sat Pat and Wayne, not even 24 hours since her surgery to sit with us...dischaged early and came over. talk about sharing something.She also appeared for her other mri, though I cant remember what it was for...relapse really made me loose a lot of my mind...I think there are parts of it all that Pat can understand that we cant, and I am glad she is there for Liz. Pat is doing well now, and so is Liz, and they spend much time together, doing makeup, cooking and laughing! It has been such a special friendship, and we were sorry we could not be here this summer as Pat recovered, however the phone calls were frequent. Liz was so worried about her, so it is good Pat is doing well..many prayers have been said for her healing.. Liz has been blessed with older friends, from Pat acoss to Nancy Ann behind us. Nancy and Billy are great neighbors, and I think Nancy is Lizzies 3rd grandmother, though she is not old enough to be. The first place Liz goes whenever we get home, is Nancy and Billy's house. The path between our homes is well worn, and little Katie dog is waiting at 3 for our car to meet her friend. The thing about children and cancer, they loose their youth. It is there, but gone, if that makes sense. A part of them becomes old. They struggle to fit back in with kids their age, and when they begin to, we know they are healing. They do become 40, when they are only 9....and we were lucky to have good friends that love our family and took on the task of helping Liz when her own age had no idea what to talk about. ... Pat and Nancy Ann, oddly enough both of them also survivors, have done more than I can write. Nancy was with Liz last year at the relay for life, walking that first lap.. will get Julia to put picture up if I can find it.. Of course only survivors can walk that first lap, and deserve to, but Liz didnt want to go alone. Nancy was the perfect person.and we plan on doing many more. ..We thank God for these 2 families daily. Need to run, girls off to school, and another week beginning. We are getting ready to think about going to sunny Maine next week, to visit our friends Matt and Nancy Noyes.....our friends from this summer....They are having a fund raiser for St.Jude and we are going!, Liz and I. Jay will take Julia to look at Univ. of South Carolina, where she has been accepted into the Nursing School...and is deciding where to go next year. She is looking for warm.....she is counting the palm trees, I think!! Becca is 20 tomorrow, and her package is on the way.....Vic home Thurs. from exams.... ma

Saturday, January 25, 2003 at 08:39 PM (CST)

Is Sun night but will just add to this. Good day here, had Bible Study here tonight and all is going fine. Trying to get makeup work done but is a lot after missing a week! so we are tired . Lizzie asleep, Julia at a Super bowlparty and we are by the fire wondering if we will get more snow. Julia did change the pictures for me, thank you...She is very computer smart and I am not. Will assign Jay a day to write but on Monday he has his jail ministry, so maybe later in the week. Good to hear from you, Vic home later this week!!. ma




Good to see Marge has found us from Texas, and we are so hoping for that swim in the ocean too next summer. We went one time this year that the weather was warm and the water there perfect for us..Liz was in all day and the water at the North carolina outer banks is not always good for short people to swim. We know it was a gift for us that day. I did come home and email Dr. Merchant and thank him for that day, and all the wonderful research he publishes on tumors and especially for us, germinomas..we would not have found him without it being published. I added a link to Taylor, who has just been back to Duke, and after her 2nd bone marrow transplant and 3rd relapse, she is now free of leukemia,with nothing but donor marrow, and there is no explanation but she got that miracle we all pray for. Why some kids get that and some dont will be that eternal question, and one I will never understand, but Neena is so grateful for where they are today. I also have a link to Kathy, at Robert's site and they need prayer as they continue to cope with his loss, and understanding it all. Her site is one I read daily and wish I could do more but what do we do? Kathy knows we all pray for her family. She has a real gift for words and expressing how each day is. Her faith is great and so is her pain.
I have mentioned several of Lizzies close older friends, and do want to write about a couple, not both tonight, but Pat and also Seth and Anita have been so special. Seth and Anita are a young couple that moved down the street and began going to our church. They have a true gift with young people and became close to our family, and Anita and Lizzie really are sisters...Lizzie would walk to her house whenever she could to visit. When Liz got sick, they were there constantly with faith and cheers. In Baltimore, they just walked in one day, driving up to visit just like it was next door. Seth is a hunter, and that is a connection with Vic and Jay, and for their first anniversary he had Vic ride with him to pick up Anita's gift.....a new gun!!!! Anita can get Liz to laugh about anything and they skip down the street any old time. When Liz was very sick they were faithful about visiting but at home, I so remember Lizzie wanting to get better so she could finally walk again to Anitas. We would take the wheelchair around the block to see them, but there was nothing like the day Liz first walked to her house. They even took the kids to Chuck e Cheese one time!!! The relationship between our families was very special, and last winter, when they told us they were moving we were so torn,,,,as they were going home to Memphis, where Anita is from and also close to Seths family too. They found a new job for Seth without even really looking, it just fell into his lap one Feb. day in 2002. Anita is a CPA, and she was then immediately able to transfer to the branch in Memphis, and within a month they had sold their house, found the perfect home that had JUST been redone in Anita's colors, and basically they were gone. The tears the day they left were plenty too, but by then Lizzie was "doing fine' and in school that winter. Then, when she relapsed, and we went to New York, and Dr. Allen said Tom Merchant, it took us a while to put 2 and 2 together, and figure out that St. Jude is in Memphis..... I think Anitas mom agrees with us that God sent them smoothly there so the way for Liz would be paved. We immediatly knew it was the right place. They met us at the airport, kept us overnight, gave us a refuge this past summer and were our family there. Not just the 2 of them, but all the extended families as well, from Anita's parents and uncles to Seths parents and sister and fiancee at the Peabody! So, God does ease the way, though make no mistake, He does NOT give this disease to anyone. If I can, I may even post a real good picture of Seth and Jay and our Dr. Merchant, as one of our checkup trips "happened " to coincide with duck season, and off the guys went. Seth also sends Julia some great articles on local interest in Mississippi, Prom Queens that hunt, and juggin, and catchin catfish with your hands...a brainy sport. So, in some way God understood, they came into our lives here in Suffolk, and then when we needed them, they went before us!! Has been a good day here, Julia at work and out with Matt, Vic at school, Liz doing great and Becca off at Hampden-Sydney for the parties. Good to hear from you all.
Pat, you are next,!! ma

Friday, January 24, 2003 at 02:52 PM (CST)

Well, busy day!! Liz at school all day, which is a good thing.. this fall when we got home from Memphis it took a while. she went for the day, and when tired she would sleep in Nancy Webbs office or the nurse, and she did well for a while. At our return check they were amazed at how well she was doing staying at school, as radiation usually has a period of time that it makes kids tired, then they bounce back. She hung right in there until late Oct. and Nov, when she sort of hit the wall, as they say. We think she had just had it, done all she could. We took her to Dr. Nadia, at KD who helped her work through the getting used to being back, and also let her know that it is ok not to always feel like everything is "just fine". Liz has had 2 summers of being away from home, either at KD and sick, or in Memphis. She and our family have not had any relaxing time, at the beach, or just hanging out in 2 years. It finally just caught up with her and she could not do it anymore! So we regrouped and let her go to school until she had just had it, then come home and rest. We then added 15 minutes a week to her schedule and after Christmas the goal was to be back fulll time. That is what we did, and it worked. She is loving it and happy. Good job.! Also, what a contrast from the 2001 beginning of school. I do want to say right here, that Julia commented that I had been harsh in some comments about KD in previous notes...The original shock and conversation was truly not fun, and I wont forget it. However, We have learned a lot along the way. One thing is that with your child, you will do anything to get the best care. The staff at KD on the floor and in the hem/onc clinic are wonderful. We could not have better friends. I have often not felt Dr. B. was agressive enough in getting information, however he immediately had the info for us to get to New York and Dr. Allen. Anytime we are unhappy with him, it is also discussed with him...so no surprises. He has been right there when we needed him and we continue to work with him to get Liz well. Anyway, Liz had her 5th round of chemo the end of July,2001, and had an odd red mark on her leg when we went in. This eventually developed, after chemo, into a fungal infection, which for anyone on chemo with no immune system is quite serious. She came home one day on multi. iv meds, and lasted one night, being readmitted with high fever, and odd swelling everywhere, especially her legs and arms. She steadily got worse, and after a biopsy of the leg showed fungus, she was started on ambizone, a green IV med for fungal infections that we were lucky, it caused few side effects. The fungus was in her blood and all over her body, and luckily it was one that was treatable, they hoped. She must have seen 40 drs. during this time, I also remember that young Dr. Pinkley, the resident with us, who was brilliantily describing how her symptoms matched some he read about in a journal, and were classic whatever...then I asked for a copy of it so I could read it...he got pale and looked really funny, and could not get a good answer out. I knew then...and said..the patient did not live, right.???? He also answered Liz when she was readmitted and asked how long would they keep her...he said "not long" . He did learn a lot with us that month, that being his first lesson. We saw him this fall with his wife and his darling first baby!!The infection control group were our best friends.. The worst times were when they finally told me they could not give us a guarantee the meds would work. They got very used to my hysteria and had a good sense of humor. This was also about the time Dr. Owen, who is usually calm and collected came in and told Jay and me he was very worried...We then did not leave her until a few days later she seemed to be getting a bit better..Our kids at home were alone at night and I am sure very frightened, coming to visit and finding her very sick. She was on oxygen, and in an air bed which finally made her a bit more comfortable. Thank God for the morphine pump!! The fungus was in all her organs too, including her lungs which made breathing difficult. We were lucky that it never went to the brain. Finally, after a major surgery to do a lung biopsy,and bone marrow, Liz stayed in the PICU overnight on a ventilator which gave her a good chance to rest and not struggle to breathe. This was also the day that Becca had to go off for her Freshman year. The day before she was to go, Mary Butler, the social worker who is a good friend was in and we were debating if I should leave her to drive up with Jay. Mary fortunately went to Dr. Bevan, who immediately come up and honestly said she was far too sick for both of us parents to be gone, even just a couple of hours away. Mary and I cried, and so did several of the nurses, as they had been there during the spring gradualtion fun and prom, etc. Becca and Sara Blythe were there too, and Sara went home to help Becca pack her room up. So, it was a few hours later that Dr. Werner came in and told us she really needed this surgery to find out what was going on. Jays parents were also flying in the same day, fortunately, so they could be at home to help with the others while Jay took Becca...the surgery went ok but Liz was so weak..she had good bone marrow and lots of white cells, fighting the infection and oddly enough also making her more sick before she could get better, but at least they knew she was making cells.. Her surgeon was a father of one of Lizzies clinic friends, a girl her age with an eye cancer. Dr. Curtiouro, and it was that night I figured out he was Sara's father...As he sat with me and I asked him about Sara, I also asked how he was doing....his answer,,,,,not good!! Dont think anyone had asked how he was, as a surgeon on the other side of it all, having a daughter with cancer he could not quickly "fix" . We had a good talk waiting for anesthesia to release Liz to the PICU. We have a friend Elisa Cartier, one of Vics teachers, that was at home that afternoon. While Liz was in surgery, and the kids with Jay to pick up his parents, my parents were getting dinner for them all, and I was waiting alone in the empty waiting room as it was after dinner time...in walked Elisa and her husband. She is so in tune with listening to God, and something told her to get in her car and come, So she did. They just walked in after the floor nurses told them where to find me, and so, I did not sit and wait along. They stayed until she was safely in PICU, and Jay had arrived. Odd, I had forgotten that . She taught us such a lesson, to listen and just do. So, Becca got off to school,with Jay and his dad, POPPOP to help haul things in, Julia and Vic shopping for a bit with Mama Jayne, and Liz was in PICU. Helen and Nancy came and stayed with me that day, and I did need them so much. when they got ready to take Liz;'s vent tube out, she was frantically writing something...Nancy and I could not tell what....sud...sud...after she had the tube out and could talk, she said"I wanted to know if they were going to sedate me!!!!" She just could not SPELL it! Funny the little things that are in memory and pop out! OK guys, you have to tell your version of this all too, as all the kids were suddenly at home alone, and Jay driving back and forth trying to do some work....I know there are other stories.! This needs to be a family project!

Anyway, all good here for now. Julia making college decisions, and Vic starts exams next week. Beccas birthday box fed ex'd off to her for next week, and all is good. ma

Thursday, January 23, 2003 at 09:45 AM (CST)

We are getting snow here!! School is out and we are loving it...like Christmas all over again. We miss Vic and Becca so much. Vic, who is nearly 15, is off at Christchurch Boarding school. He has a learning disability, and they are supposed to be good at that, and he loves it there. A small percentage of the boys are in the Learning skills program, and it is college prep. Last spring, when Liz and I found out we were going to be gone, I had about 5 days to get Vic ready for school before we left, as I would not be back before he was leaving. So, we shopped and unlike girls, he did all his shopping for a year of school in one store in about 20 minutes...in August, we got home 3 days before he had to leave, so I feel like I did not see him in months..was not "time" for him to go, so it has been hard. I think for him this whole thing has been difficult, as he does not ask a lot of questions, and I am never sure how he feels. He did spend hours sitting with her inKD, and was always totally helpful, though not always calm and quiet, and the fun he brought was what we needed at the time. He did love to play in the med. supplies though and came up with some novel uses for some of them...I often feel he was the ignored child, and wonder how he feels about that. He could sure calm Liz on the bad days by sitting and rubbing her back,or her face and head...he was very tender with her..and still is. The constant sitting used to get to him I think, but any cancer parent knows that sitting patiently is part of the deal. I can do it now for hours. We were laughing the other day about Beccas prom...Liz began chemo the spring Becca was a Sr. so was inpatient for so much of her last spring at home. She would go in for chemo, and have to be inpatient due to the DDAVP and the fluid control, then come home and after a week go back for infection. So, she missed SR. day, which is a big celebration of graduation, and also did not get out for PROM, which was terribly upsetting forLiz to miss. Helen sat with Liz while Jay and I went to the prom cocktail party, and then Beccas friends went to KD, in the prom clothes, up to the 8th floor where all the nurses had been waiting to see them, and visited Liz on their way to the dance. It was a very special time, and we have great pictures. May was a rough month for us, with Liz loosing weight down to 30 lbs, and getting admitted with infec., trying tpn and getting enlerged liver, then feeding tube which is not fun to put in, and having to stay forever to adjust to that. Think we were home a week that month..Memorial day is our big beach weekend with tons of teenagers at the beach house, and Jay had the duty.....oh man. He was exhausted! My parents were there then too I think, and the cousins...think they counted about 20 on the beach. We had such a routine at KD< and the nurses could really make fun of Jay in the morning with his hair sticking up..they were always wonderful and so busy, just never enough of them to do all they had to do on that floor with so many kids needing so much. They are heros and I hope they know Julia is planning on going into nursing after all this..I am sure they inspired her. I am amazed at how they can work all day and still, like Paula look great walking out the door to go home. The night nurses used to come to our room to take a break as we played the classical music all night to keep Liz asleep and calm. .we all got to know each other well. Need to run, going out in the snow!By the way, Liz weighs nearly 46lbs. now, Life is such a gift and we are so blessed with ours. Each day is so special, and some days I cant believe the beauty of it all. God is so good to us. ma

Wednesday, January 22, 2003 at 06:20 AM (CST)

"Rejoice evermore. Pray without ceasing. In everything give thanks for this is the will of God in Christ Jesus concerning you." 1Thess. 5:16-18
Thanks to an unknown inmate at WTRJ and to Steven V.
Jay





Glad to see Jay is joining us! Was thinking this am, and thought of a couple of things...my cousin Sue and John were also at Hopkins with us, and arrived with a big picnic basket of food! which of course is not allowed in the Neurosurgery waiting room...we spread it out and had a picnic until the desk lady just could not stand it anymore and made us put it away.. When we were getting Lizzie ready for surgery, Dr. Weingart came and talked to her and she asked a dozen questions, then he told her to get her surgery gown on....she had on green comfy pants that she talked him into letting her wear so her underwear would not show, and then had to go through the surgical gown closet so she would MATCH....how could you have brain surgery if your clothes didnt match! Then she took Jays hand and with all of us kissing her walked down the hall, into the suite and into the surgery room, ..brave the entire time and facing what ever was there as long as she had someones' hand. These kids that go through this are amazing. They dont whine they just go and get it done. The good memories are fun to write!
We scheduled our next clinic appt here today through Amy, who used to be one of the wonderful nurses on the famous 8th floor. Seeing her is fun, and brings back so many memories..the staff and friends there will always be in our hearts,,,how is Corinna doing? Remember the night she came back to see Lizzie all dressed up for a date out so we could see how good she could look? It is so impossible to name them all, as many are still our good friends .,I will not forget the look on Peggys face after a really busy day when she came in the room to Vic and Matt blowing up gloves on their heads with straws,.,we need a picture of that one. As this goes, and I mentally move on, there are too many things to go over..It was all so strange at first...then we just fit right in. Kim in clinic, who was sort of new, and the times we had down there, and the nights we were the last to go..waiting all day for admission, our favorite room upstairs, and the candy dish., Some of this is too overwhelming to even get to but I will one day soon..can handle the little peices of it but the big stuff not ready to write yet. All of kd knows we love them and it feels like home to go in and not even have to stop at the desk for a badge...I cant say Lizzies chemo was easy or fun, but we did have some wonderful guides through it all..the staff changes each time we go and many we knew so well are gone to other areas, but we will touch on it all. Even those nights in that window seat, and trying out the new chair bed for for them to see how it was...since we were there anyway and weren't going anywhere. We knew we were there too long when we did that! Keep in touch...ma

Tuesday, January 21, 2003 at 07:35 AM (CST)

Good morning! Julia did a good job of updating and I am finding this site is very therapeutic for our other kids...It is amazing how the whole family becomes a cancer family, and what they all know. It is often that the other children are put on the back burner, and my friend Nancy Hewitt told me that after her daughter, Ashely died, her other 2 children began to express to her how much they had missed and also needed their mom during the years of Ashleys illness. So, we all learn from each other. In thinking back over the last years, many of the memories are some I choose not to revisit. However there are many wonderful ones, and they are the ones we all laugh about now. The first month, when we were so naive but determined to find sonething that could be done....and the week after the MRI, which was Becca birthday, she had several friends over and we all stood in the kitchen in tears together, laughing at the sight of us all. Then, Becca having to go on a field trip to Washington, with her government class the day we got some important tests back, and her teacher, Mr. Gill. Do you all remember the show Americas Sexiest Batchelor?? That was him, he taught at our little school, and had the pleasure of giving her the worst news...we taught him some things as well, and he did a beautiful job. Our wonderful neighbor, Jeff Foreman, who continued to insist that we should try Hopkins, how right he was to push, as during those first weeks it is hard to know where to turn. The rumors flying were all so awful, and it was hard shielding our kids. We will keep for years the lady in our kitchen window that Nita Bagnell brought, that she had in her window for about 20 years..it was given to her when her oldest daughter, now grown and married, had a brain tumor as a very young child. Hopefully we will not meet anyone along the way to pass it to. Just seeing Nita made me feel better. Our Julia turned 16 when we were in KD, the hosp in Norfolk, and even though it is 25 miles and through tunnels, she drove over that day, with all her presents to have her party in the family room. I also remmember Julia and that terrible softball team, that she had been on for 2 years, and that spring with Liz so ill...she would go to every practice, or game, usually sit on the bench, and then drive over to see us. Becca doing the same after lacrosse, but at least lacrosse was fun. There was not a day I can remember that we did not get an offer of food, and after so many weeks we finally hung our key outside and just let whoever come on in. Poor Donna Davis brought dinner one day, and our house was a wreck with our being gone for several weeks it seems. She struggled through the mess to then find our bird flying around the kitchen, and she is phobic about birds...I think she crawled out. Vic is often the forgotten child in this, and I hope he will write here one day, as being the middle, etc. he emotionally just gets skipped over. This has all affected him deeply I am sure, and hope he can express it some day. He may even tell you about his July visit to the Kings at the beach, while Jay was out of town on short business and I was at KD. All Jimmy Lee said on the daily phone calls was "everythings fine", and only later did we find out that Vic and Pat had been out on their property which is beside many acres of Nature Conservancy property, and set off fireworks, started a fire, burned up ACRES of marsh and had all the fire dpt.s in the area there putting it out for hours. Jimmy Lee just handled it and never told us til later... The kids were alone so many hours that year. My parents were here for backup, and never failed to assist, as well as so many friends that I would leave out too many names if I began. Helen did coordinate it all beautifully, as well as be the girls friend...probably has things she will never tell. I think the other kids have much to tell about their experience, and I hope they will over time.
So, today Liz is off to school all day, and happy to be there. She is doing well in school and beginning to do 10 yr old things. A few weeks ago she did something that resulted in Jay turning around and fussing at her...she went upstairs crying, and said" He fussed at me, Julia, and he has done it before, too!!" That tells a bit about our last 2 years! Keep in touch, ma

Monday, January 20, 2003 at 10:29 AM (CST)

This is Julia, Lizzies sister, this poem is for everyone that has fought and is fighting an illness. ALL of ya'l are warriors! Stay strong and never give up!

THE WARRIOR
Gazing in the mirror
I see a warrior's face.
Fully clothed in armor;
No fear and no disgrace.
A tear it never offers,
A smile it always gives,
No sadness does it show,
But what a life it lives.
Needles going in
As blood is taken out,
But still no sign of pain,
No cries to make you doubt.
Each day you see this person,
And think that they're so brave,
Each day you see us laughing
The tears are ours to save.
So when you see our armor,
And think we're calm and mild,
Remember this one thing,
The warrior is a child.
~Edmarc Hospice for Children

Sunday, January 19, 2003 at 01:48 PM (CST)

Have sent this page to Becca at JMU and Vic at school, so will see if they get into as well. Told Julia and Jay they will have to help us.! Got note from Dr. Merchant this am that Liz's spinal was clear of any cells too, as expected, so final test was good, and that is great. Plan is to head back in April to St. Jude for rescans and to begin Growth Hormone, so little Lizzie will begin to catch up in height. She is steadily gaining weight, and we will keep her doing that, and plan to hit the stores this summer for new clothes, which she has not really needed since about 2 years ago! What a treat. Our friends Matt and Nancy are headed down to Memphis now, and we are praying constantly for Matts good reports, and his continued improvement as he moves through his chemo. I did meet Nancy's good friend Dr. Jenkins at the Starbucks line. Sorry I did not get to get any real scoop as he has known her since Nursing school! and there must be stories to tell. No news from here other than going to Church this am where many prayers of thanks were given.

Have added a click to our friend Taylor, who is now in remission with total donor cells, after 2 BMT at Duke, relapse, being told to go home with a few weeks left, and due to God's healing and her parents stubbornness, Gleevec, and prayer, is now shocking everyone! Love to you all....ma

Saturday, January 18, 2003 at 06:05 PM (CST)

OK, Lyle, We are officially here. It has just been so long, and to catch up seems so futile, however, as this is not the end, but a continuation, I guess I will begin at the beginning and try to keep it brief. Our thanks to our good friend Lyle, at St. Jude for forcing the issue, even though I really did not want to deal with all this memory!!

Jan. 2001..1/17/01: Eye appt. with Dr. Andy O'dwyer, our long term eye dr. and also a friend...lucky him. The eye exam immediately showed that Liz could not see the big e on the eye chart, or even fingers held up. Andy scheduled a MRI for the next morning and told me he was certain Liz had a brain tumor, and was nearly right on with the location....due to the nerve damage to the nerves affecting outer periferal vision that run through the center of the brain... MRI the following day showed tumor, and we then began....thinking it was poss. pituitary tumor and scheduled a Neuro/sur. consult for the follow. Tues. am.

Tues.: went to Norlolk to see the Neurosurgeon, who looked at the scans and went pale, babbled and said it was not pituitary, and was hypothalmic, and the surgery would be too difficult to do, etc etc etc....needless to say we did not like him. He sent us home, and scheduled an appt with Marta Satin-Smith, the endo. and Dr. H. Bevan, the oncologist for the next few days. Went to see Marta, who is now a friend, and she explained about the location, did lots of blood work for hormones, etc, and then sent us to Bevan. I really wont go into all of that appt. other than he was terrible, and we went home totally blown away and discouraged. He did tell us there may be one Dr. in New York that could do this surgery, and he was to call him. After about 3 days of nothing being done, our neighbor, Dr. Jeff Foreman, kept telling us to GO TO HOPKINS....he trained and worked there....SO, after Norfolk getting nowhere, Jeff called Hopkins and we were there in 2 days to meet with Dr. Jon Weingart, Neurosurgeon, who took a brief look at Lizzies scans, sat down and talked to her about 2nd grade, as he had 4 children just like us, and one in the same grade. He then told us he could do the surgery with no problem, and had done several of them successfully before....Total turnaround from the Norfolk group, and we went home thrilled....scheduled it for 2 weeks. Got home, Norfolk had still not gotton the NYC doc on the phone, so I called him, and he returned my call from the train station...was so nice, but aggressive, and we decided to stick with Johns Hopkins, and Dr. Weingart....then Liz would also be reviewed and scans seen by their tumor board which includes Dr. Ben Carson.... The surgery went smoothly, and we were kept company during the whole thing by our friend Jay Butler, and Nancy and Joe Webb....all the kids were home, as the girls were in EXAMS....naturally!! Afterwards, when we talked to Dr. Weingart, he told us the preliminary path showed GERMINOMA, which was one tumor we had not heard of, but was the best, according to him, as it responds well to treatment and he could biopsy only, not remove any real percent. So, after several "easy " days in ICU, with JayB and Nancy staying, Jay's brother Dutch coming up and keeping us company overnight, and my brother Bart driving the kids up, as well as Helen and Kathy coming up to bring Becca who finished exams early, and Seth and Anita just walking in one day to surprise us, and Jays parents coming up for several days, but having to leave after one due to a major snow storm coming up, Liz was moved to the floor, did well, and we came home to do the protocol out of Sloan-Kettering written by Dr. Jonothan Finlay.....

Many things happened along the way to lead us to Hopkins, and show us the whole time we were in the right place. from parking places opening up when we drove by, to all sorts of things that were just right. God truly led us there, and the hospital there feels like a power is there, and we know Dr. Weingart was led to leave Liz with no damage other than exactly what he said would be, the hormonal defficiencies that most of the germinoma kids have due to the location of the tumor and the surgery. After being so discouraged and the almost hopeless feel to Norfolk, Hopkins was totally upbeat, and top notch....They did tell us the chemo was standard and could be done in Norfolk, or we would never have done it anywhere else. I am certain Jay will have more to add about the Spiritual feel to Hopkins....it is a blessed place and we know God is moving there with the miracles they are doing.

So, we came home to Childrens Hospital of the Kings Daughters, and began Lizzie's chemo only protocol, which was to avoid the radiation that they here told us could damage her so, and the chemo which was to be soo easy. We installed her port, and began. To shorten it, I will just say that Liz is a totaly trooper, and our entire family and community were behind us and there the whole time. I think she was and is on every Church list there is, and we felt that she, and our family was supported and held up by the community the whole time. Liz struggled on chemo, and had infection after infection, would get chemo, be out a week at best and back in with some whatever, .....she spent from March to Sept. mostly inpatient, had 2 ports, and then 2 lines put in and removed due to infection, lost 1/3 of her body weight, was down to 30 lbs. before an NG tube was run, got an enlarged liver from the TPN, had numerous c-diff battles, blood infect., and nausea the entire time, which was not controlled by the Dr.s there, however probably could have been by iv meds at home.....we became pros at travelling with constant nd tube feeds, home iv's and big basins in every car.....we spent Beccas birthday waiting to find a surgeon, Vic, Julia,, and my birthday inpatient, and celebrated Memorial Day, 4th of July from our room there on the 8th floor. Becca, after planning for her dad and I to take her to College for the first time, packed her car alone, and had to leave for Freshman year with Liz in PICU, me there with her, and Jay and his dad, POPPOP taking Becca to school to move her into her freshman dorm room....lots of tears that day, for sure. Major surgery the night before, and then that fun drive up. (Her soph. year has gone great, however) Her scans showed diminishing tumor, and after the 5th chemo, she was inpatient 7 1/2 weeks with a fungal infection, had numerous surgeries, lung biopsies, was in the PICU on a Vent, and finally discharged home in a wheelchair, with a tiny little walker, months of fungal meds iv at home, tube feeds, more surgeries to remove the rotten fungal abcesses she kept developing, and after nearly killing her, deciding not to do the last chemo. However, lets address Lizzies spirit and her self, which never waivered. The child is amazing as God carried her...she did not complain. She cheered us all. Her brother and sister drove to see her every day, as well as my parents, daily. Liz loved every nurse she had, and she had wonderful ones. She never failed to ask for Evie, the chaplain to come every day, as she liked to have a prayer with her. She never stopped telling us she loved us, and apoligizing for any "inconvenience". She is known at KD just as Lizzie, and they all, in every dept, love her, and she loves them. Lizzie is truly guided by God, and there must be a plan for her, as well as our family, as we have met some amazing and wonderful friends along the way. Liz has lost some friends, and it is sad that one her age must do that. We do not stop smiling, and trusting.

In Sept. 2001 Liz began to go to school for a bit each day for Aunt Nancy to tutor her. She would not take the wheelchair in, and used that walker, the struggle still makes me cry....as well as it made the school office cry to see her come and go. After several weeks, she walked all the way across the back yard to see Nancy Fulgham, and began to remake the path to her house. She would not let me help her with that walk. She went to school to class, with the feeding tube, bald, and sat in class the first day, no hat, and raised her hand, went to the board and did a math problem....from the hall I watched her, and then took her home when she got tired. Her teacher, Wendy Blousey, who had originally noticed the eye difficulty, had her for the second year, and her love is one main thing that made school "easy" for Lizzie. In Nov, Liz decided one afternoon she was tired of the feeding tube, and with the help of Helen, our dear friend that also came to give shots, and sat with Liz in the hosp the day I left to go college shopping with Becca, and Liz was as sick as she had ever been, with the help of Helen we just pulled that tube out right in the kitchen!!! Then, just before Thanksgiving we got rid of the gross green stuff, the fungal iv meds that we celebrated tossing hundrends of $$$$ worth into the trash!!! From there, she was uphill, and did fine, with a great Christmas and spring.

Until April 2002, when wonderful Dr. Bevan, after a 3 day wait to find out the results, called me in the car while I was in the carpool line to tell me there were problems with the scan. We shipped it all up to Hopkins, waited a month and yes, she relapsed. Dr. B. called NY, however we refused to see Dr. Finlay, who wanted to do HGH dose chemo, with stem cell transplant, and radiation. We did agree to go see Dr. Jeff Allen, at Beth Israel in New York. We again knew we were blessed, with mysterious Lion King tickets, and the wonderful play room lady whose daughter many years ago had, was treated, and was cured of a ...germinoma.. Dr. Allen was very blunt, recommended radiation, and pulled up studies by Dr. Thomas Merchant, who had written some studies on Germinoma at Sloan, but was now at St. Jude.... in the middle of the night, I realized that our wonderful friends, Seth and Anita, had moved to Memphis in March of 2002, and that is also where St. Jude was. Of course, we know they moved to their beautiful new home, with the perfect jobs, near their families as again this was part of Gods way to heal Lizzie...he does not cause any of these illnesses, but does help make the way for us to find what we need for treatment. We called Dr. Allen in the am, and he graciously agreed to do all he could to help get us to Memphis. Returning to home, I found our Dr. B was out of the country and had left no Dr. to follow Liz during his absence or help make calls to get her there. They had planned on doing her high dose chemo right away, however..... We found Dr. Merchant's web site, and then emailed him. He responded late that night, and I called him right away, about 10:30 his time. He told us the protocol without radiation was a bust and had more than 1/2 resulting in relapse. (Of course with germinoma the numbers are so low it is hard to tell if that is half unless the study clearly says that.) So, he said send the scans, and however could not agree to take her as there was no active protocol. After this conversation I woke Jay, and told him that was where we were going.....the next am, Jay called his friend Gus Miller, who called his friend Pete Decker, and we called him with Gus' intro. Mr. Decker, a past ALSAC board director, called the ALSAC director there, and the admission was done...again Gods hand in getting us where we must be. Dr. Merchant emailed us with the info he needed and said we had pushed the right buttons...so, with NO help from KD, calls and letters from Dr. Allen and a lot of help from ALSAC, Liz was admitted to St. Jude for radiation, which Tom Merchant says he likes to do as "Germinomas are so easy". Will stop this for now, and keep the hope that his easy and near perfect record of cure for "his" germinona pts. remains good.,... Will stop about June 2002 and leave it for another day....Lyle, look what you started. This is all a trip of faith, and our families love. Liz is amazing, as many of these kids are. She, and our kids, have been inspiring. Hopefull, Julia, Jay and Becca and Vic will add their part, and maybe Liz will be still long enough to do some.

Saturday, January 18, 2003 at 09:45 AM (CST)

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